Relapsed High Risk Myeloma - Update July 1 2013

Still not sleeping well...up every 2 hours or so to use the bathroom or "whine" about some ache to myself.

I did have enough energy to get the mail for my father and deliver it to him.

Also helped at the Mackay Food Bank, which I do each month and have for years. It was so warm in the old building with and outside temperature of 97 degrees or something like that. I'm glad I have the energy to still help out the Mackay, Idaho community.

 

The Food Bank is located in a building that first served as a grocery/hardware type store with Mackay, Idaho was founded in 1901. Hendrick's was doing business as early as 1906.

Today, the front of the building serves as the Custer County Sheriff (Deputy) office and the back as the Food Bank. Shown below in 2004.

Jani and I will head to St. Luke's Hospital MSTI in Twin Falls, Idaho tomorrow to get my bone marrow biopsy results. Hopefully, the lab values and bone marrow biopsy results will be such that I can continue another cycle of Bendamusine/Revlimid 5 mg/Dex chemotherapy.

We had a big lightning and thunder storm tonight with about 20 minutes of rain. We had to put Kemmer's "Thunder Shirt" on. It isn't a complete cure, but sure helps her anxiety with the "BOOMS".

Relapsed High-Risk Myeloma - Update - May 18 2013

Slept pretty well last night - five hours in one stretch which was a miracle for me. Haven't slept well for the last 2 years - sleeping only in 2-hour bursts. I took 5 mg of Xanax at bedtime.

Not sure when the CONTEST for Faye's activities will end - but probably by this Friday, 24 May 2013. So, don't get too busy - and ENTER NOW via the comments section.

Had a pretty good Saturday. Drove to the U.S. Post Office to pick up the mail for Paco and I.  Had a nice visit with Gary Lords and Ronnie Hocking outside the Post Office...really nice guys.

Delivered the mail and was going to go to Ivies (grocery store) for Jani's milk and then to get gas for Jonah (1999 Honda Passport) and FORGOT to do either! I guess my brain is not as clear as I think it is.

Jani stayed home and edited the new 2013 Memorial Day Mt. McCaleb Cemetery Book that I finished early this morning. We have 1,495 known graves in the cemetery. There are probably more, but in April 1938, Mackay City Hall burned to the ground taking the cemetery book with it to ashes. The cemetery book was "recreated" but, has ISSUES especially for those graves that did not have headstone markers. City Foreman, Ken Day, has been helping me with the current update.

I made the following plat map of the Mt. McCaleb Cemetery showing the plot burial locations. Just making this document should give me a "lifetime achievement award" somewhere.

Earl Lockie had the plot map enlarge, framed it, and displayed it in the kiosk over by the mower shed. Also in the shed, is the printed Mt. McCaleb Cemetery Book that I typed up this week and Jani edited. Jani is especially conscious to detail - so, I doubt there is missing comma. Someone looking for a grave location first consults my cemetery book to determine which Block and Lot they are looking for and then consults the Plat Map. It is a pretty good system until we get to some of those graves prior to 1938 when the fire burned the original cemetery book - but, we try. I've been doing this yearly Memorial Day Cemetery Book since 2002. I've photographed most of the headstones and entered them on findagrave.com too.

Tomorrow, I will create a version of the cemetery book that shows the location of the VETERAN'S graves so the American Legion members, along with the Cub and Boy Scouts can mark each Veteran's Grave with a flag for Memorial Day. This is a huge task for me, but made easier with XCEL (computer program). I'm hoping my NEW SYSTEM for this Memorial Day works - we are going to do a practice run on Monday.

Had a visit from Vickie Mae and Don which is nice (they live in Arco). Vickie brought cut flowers again and I had to tell her that I'm allergic to flowers in the house - what a bummer. I just cannot do fragrances for any kind - perfumes, flowers, essential oils, etc. So, if anyone visits here at the house - please come fragrance-free.

Jani supervised my lawn care guy and raked the horse poop away from my back fence since our 3 retrievers think horse poop is a BIG TREAT and dig under the fence to get it.

I drove back to Ivies (grocery) and got Jani's milk. Had a good visit with one of my favorite Mackay guys, Kase, who was out for a cruise on his friend's pink bike, in this PJs, and winter red-neck hat. This kid listens to the beat of his own drummer and I LOVE HIM! At least he has shoes on today...he loves barefoot, even in cold ole Mackay!

I napped off and on all afternoon and woke with a SHARP, TREMENDOUS PAIN in my left shoulder area. Back in 2002, I fell off a ladder and badly broke my left shoulder in to 7 pieces (no mention of myeloma was made back then, but maybe I had it). At any rate I had major surgery with the placement of a metal plate and 9 giant screws to patch the fractures back together. One of the top screws in the back on the left side is really bothering me right now. I'm going to have to get it checked when I go to Twin Falls this week. I kept an ice pack on it all night in case it was bleeding in there with my platelets only at 18 (norms 140-440). I don't need this! Oops, whine, whine, whine - SORRY. Jani is always SO GOOD to help me CALM DOWN when I have pain. I took 1/2 Percocet and then the other 1/2 later. I also took, for the first time, 10 mg of Xanax at bedtime.

Pomalidomide (Pomalyst) Update For Relapse After 7 Doses - March 12 2013

Absolutely NO sleep last night - My gastrointestinal track has just STOPPED all of a sudden and I suffered all night. Took Senna-S and Phillips Tab - hope things start up again SOON.

Took half of my weekly 40 mg Dex for the day with breakfast (20 mg). Will take the second half with dinner since I take my Pomalyst at bedtime.

My GI tract started back up, but, I am still distended in my abdomen.

Update after first 7 days of pomalidomide (Pomalyst) 4 mg. Drove to Lost Rivers Medical Center in Arco, Idaho (30 miles each way) and had my blood drawn to see how my bone marrow is reacting to the new Pomalyst. They had not received my blood draw order from St. Luke's Hospital in Twin Falls, Idaho and I had to call them to get the order which came quickly, but lacked the LDH which should have been drawn - oh well.

My labs are not much different than before I started the Pomalyst 4 mg. My white blood cell count (WBC)  is low at 2.2 (norms 4.5-11 and reflects your ability to fight infection); ANC (absolute neurtrophil count  is low at 1.36 (norms 1.9-8.8 and reflects your immune system quality and whether you can be in public with or without a mask); hemoglobin low at 9.2 (norms 12-16 and reflects your oxygen carrying capacity or energy level) and platelets low at 97 (norms 140-440 and reflects your ability to clot your blood). I hope my platelets hang in there throughout the Cycle 1 (21/28 days).

My kidney function tests via my blood continue slightly abnormal. My creatinine is slightly high at 1.10 (norms 0.52-1.04); BUN is normal at 14.4 (norms 7-17); and GFR is abnormally low at 53 (norms > 60). My liver function tests are back to normal since I stopped plain Tylenol.

Drove back to Mackay and pretty much slept all day on the sofa...had to make up for that sleepless night.  Had a little gastritis, but nothing too bad.

The St. Luke's Hospital MSTI (Mountain States Tumor Institute) Pharmacist from Boise called today to ask me about any side effects that I've had from the Pomalyst. They have to report side effects to the manufacturer, Celgene, and they will be calling me each week. I explained that the only side effects that I could attribute to Pomalyst were:

• burning scalp (improving)
• creepy legs (had before I started Pomalyst, but seems worse at night – taking 1/4^th to ½ tabs of plain Oxy which helps. Trying to balance dosage so I don’t feel hung over during the day)
• increased neuropathy of left leg especially from knee to groin – was about a 2 (1-10 scale) prior to Pomalyst and now 4. I am attributing my left hip pain to neuropathy now since all of my tests (plain x-rays and MRI were normal).
• tired, especially after taking
• constipation (I forgot to tell her this, I will next week)

My neighbors this morning.

Pomalidomide (Pomalyst) Update For Relapse After 5 Doses - March 10 2013

Update on side effects of pomalidomide (Pomalyst) after five (5) 4 mg doses. I take the pomalidomide just before bedtime because it makes me almost instantly tired.

• continued scalp burning
• creepy legs with a fullness feeling in left calf (like it is being blown up with bicycle pump)
• neuropathy of left leg rated 4 on 1-10 scale, especially from back of left knee to left hip
• neuropathy of left foot is mild
• poor sleep attributed to neuropathy
• tiredness, especially in afternoons and evenings
• no diarrhea and no constipation

I have been experimenting with small doses of oxy (1/4 tabs) to relieve the neuropathy and not leave me feeling hung over while awake. The scalp burning might freak me out, but since I know this was only a temporary sign after I started Revlimid (a relative of pomalidomide), I'm fine with it.

My gastritis is GREATLY improved - I'm sure it is caused by dex and not pomalidomide. I take 40 mg of dex by mouth each Tuesday. Almost instantly develop gastritis BURNING PAIN after taking dex and by Friday had very little to no gastritis this week.

Continue nightly Fragmin 15,000 unit injections to thin my blood and prevent blood clots from pomalidomide.

Have been walking Kemmer daily - 0.82 miles on 7 Mar 2013; 1.28 mile on 8 Mar 2013; and 1.28 miles on 9 Mar 2013. My back hurts across my scapula when I walk, but that was happening even before I was officially diagnosed with myeloma.  It is still winter here in Idaho and COLD. My hair is still growing and I think I even need a haircut to even it out.

Able to do laundry, house cleaning, etc. without problems. In addition, I feel like I am clear of thinking of late.

Pomalidomide (Pomalyst) Update For Relapse - After 2 Doses - March 7 2013

Day 1, 5 Mar 2013 I started on 4 mg of pomalidomide (Pomalyst) the evening of 5 Mar 2013. Just like Revlimid, I thought it best of take in the evening since Revlimid made me tired and pomalidomide is in the same family with Revlimid. 

I also took 40 mg of oral Dex (each tablet is 4 mg, so I have to take 10 for 40 mg). The oral Dex almost instantly cured my creepy leg syndrome, but it wasn't long before I had good case of gastritis going AGAIN. I took Carafate Suspension and that helped some, but the best cure for my gastritis is a slice of lightly toasted bread. I attribute the gastritis to the dex and not the pomalidomide. 

So far, I think the only side effect that I've had after one capsule of pomalidomide is being tired almost immediately after taking it. I slept well from 7 PM until 11 PM. After that I didn't sleep too well, but I stayed in bed and only watched television for about 2 hours around 1 AM.

Day 2, 6 Mar 2013 I had continued gastritis. Around 4 PM, my creepy legs returned with a vengeance which I'm pretty sure is from the pomalidomide and I had a frontal headache which I thought might be from our cloudy, off-and-on snowing weather today. I ate dinner early and the headache disappeared. Had another poor night of off and on sleep. I finally took 1/4 tab of oxy (a little medicine goes a long way with me) around 2 AM for my creepy legs and slept until 6:45 AM - this is good.

Day 3, 7 Mar 2013, gastritis. Up this morning, clear of thinking and don't feel hung-over from the 1/4 tab of oxy last night. Mild gastritis. No creepy legs this morning. I do have a burning sensation over the crown of my head, but it does not itch. I had a similar, but WORSE burning and itching when I started Revlimid, but it dissipated after about a week and never returned.

Summary of "maybe" Pomalidomide Side Effects:

• tired after taking
• very creepy legs
• burning scalp sensation

Dex, MRI, Pomalidomide Approval Sought For Relapse - February 28 2013

The 40 mg of Dex I had yesterday pretty much kept me awake all night, but I kept busy with watching television and doing computer work.

Went to Walmart (wore my N95 mask) before my MRI of the hip and pelvis appointment at 10:15 AM. I'm so used to wearing this mask, it doesn't phase me when people stare.

At St. Luke's Hospital Radiology, I discovered they had me come 1 hour early to fill out 3 pages of paperwork (fortunately, I had a written summary of all my previous tests with me, which helped in filling the form out), get my clothes changed with no metal, and be ready for the MRI Exam. The MRI Exam took 1 1/2 hours and technician Melissa was very good about explaining time frames to me. I was happy to have the ear plugs and ear muffs.  I must have fallen asleep in the MRI Scanner because it didn't seem like 1 1/2 hours.

Had a call from the St. Luke's Hospital MSTI (Mountain States Tumor Institute) Pharmacy and they are working hard to get me approved for the pomalidomide. I have to call Celgene and complete a Pomalidomide SURVEY - basically to assure I cannot get pregnant and will not share the medication with others and not donate blood since this medication is a derivative of thalidomide (known to cause severe birth defects). This SURVEY has to be filled out every 6 months. I called and talked to my Anthem Insurance Transplant Coordinator RN letting her know that they were requesting pomalidomide for me. Now, I just have to wait to hear about the decision. Pomalidomide (Pomalyst) costs $10,500 for a 21 day supply.

Drove home to Mackay on dry roads. Just as I arrived home at 3 PM, it began to snow.

The 40 mg of Dex has my face puffy with bright red cheeks. Don't look at my weird hair....

Fell asleep on the sofa late afternoon and slept until 9 PM. Got up and went to bed and couldn't sleep AGAIN...but, I stayed in bed all night without any technology to keep me awake.

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

Summary February 8 to February 12 2013

February 8 2013: Couldn't sleep last night and finally got up at 3:15 AM...might as well do something than fret that I cannot sleep. 

My guts are hurting. I took Pepcid on top of Zantac and Prilosec with a little relief. The burning sensation in my stomach with pain that radiates around my chest feels best when my stomach is FULL. 

I noticed today for the first time a little bit of hair in the shower drain - the first hair that I've lost since March 2012! I think this is just normal hair growth and loss.

February 9 2013: Slept much better and have a lot more energy today. Continued gastritis and I took Pepcid again. Worked all day on my medical deductions for my taxes and I'm almost finished.

February 10 2013: Again, slept better and my energy seems good. Revlimid Day 12/21 and diarrhea as usual. Continued gastritis.

The bruise by my Bard Power Port continues BRUISED.

I can take Dex 10 mg on Sunday's, but decided not to - mainly to control my appetite.

I walked Kemmer 1.28 miles. Windy and cold.

Mine Hill from Big Lost River Smelter Bridge Feb 10 2013

New hat from a friend in Alaska. She made it!!!!

February 11 2013: Woke really TIRED this morning. Finished up my taxes and got them in the mail this morning - YEA!

The injection sites on my abdomen have been oozing a little bit of blood (very little), so, I think my platelets must be low. I only gave myself 7,500 units of Fragmin tonight instead of the normal 15,000 units. Called and ordered more Fragmin which will be delivered Friday, 15 Feb 2013.

No walk today because it is just too cold outside.

February 12 2013: 
Bruise continues next to my Bard Power Port, but it starting to change colors in healing.

Busy Day - November 17 2012

I went to the South Custer Historical Society Christmas Bazaar at the Mackay, Idaho school today. This annual affair draws most of the community and is so much fun. I wore my mask, but everyone is used to seeing me in it.

Evadean Bauer and new coordinator, Diane Wilson.

Then, in the afternoon, I went to the funeral of a 95 year old friend, Dolly Ausich.

By 5 PM, I was EXHAUSTED and napped on the sofa until 7 PM, when I finally went to bed. I hope my hemoglobin recovers quickly and gives me more ENERGY.

Cycle 1 Week 3 Day 2 Carfilzomib and Dex - November 14 2012

Got to love dex! Couldn't sleep at the Quality Inn in Twin Falls and finally at 2 AM, just turned on the lights and worked on my genealogy files at ancestry.com. I'm making good progress on that front! It is better not to fight dex.

Along with decreased urine output last night, I felt bloated and swollen in my gut. As I walked in to my 9 AM appointment at St. Luke's Hospital MSTI, my heart was pounding and I was a tad out of breath which didn't seem to get better as I waited for the invitation to go back to the Infusion Area.

Once back in the Infusion Area, they weighed me and I had gained 4 pounds in 24 hours, my pulse was a sustained 90 something and although I had no swelling in my feet, my face and gut were swollen. RN Letia spoke with Dr. Padavanija and they decided it would be best if I took 20 mg of Lasix (diuretic). She wrote me a prescription for Lasix and cautioned me to take it only sparingly since my kidney function is not totally normal.

They were able to order a LDH on the blood that they drew from me yesterday. Good news, the LDH for 13 Nov 2012 is down to 615 (norms 313-618). It was 639 last week, down from a HIGH of 1,046 the week before.

RN Letia was able to use my IV that was placed yesterday by RN Vicki. I received fluids, followed by the Carfilzomid (Kyprolis) at 20 mg / metered squared dosage, followed by more fluids (a total of 1,000 ml of fluids plus the fluids the medications were in). I took 4 mg of Dex by mouth.

I was able to leave by 11:30 AM. Went to Walmart to pick up my Lasix prescription and headed out of Twin Falls, Idaho for home in Mackay, Idaho at noon.

TIRED Sums Up The Day - November 3 2012

I've just been TIRED all day. Had two - hour long nadirs (naps) mid-day and early evening. Day 5 of 21 for Revlimid 10 mg (Cycle 1). My scalp continues to itch, but the hives on my belly have improved.

I did manage to trudge down to the Big Lost River Smelter Bridge with Kemmer (1.2 miles).

 Still swollen with the steroid look. Another beautiful day!

Home Sweet Home in Mackay Idaho - October 21 2012

Feeling pretty good - better energy. My neuropathy continues, but I think it is some less intense. Didn't sleep well last night, so, hopefully, I will tonight. Got the house vacuumed and took Kemmer on a walk to the Big Lost River Smelter Bridge (1.20 miles).

The Big Lost River is really low right now.

 Could clearly see trout swimming around.

2nd ASCT - Day 142 - October 7 2012

Slept well last night AGAIN - almost afraid to say it. The neuropathy in my left foot and leg continue, but I seem to be used it. Only one leg cramp in the night.

Had better energy today and cleaned my house - well, I vacuumed it! I need to get the crawl space openings covered for winter and I had that on my list too - but, there is always tomorrow...or maybe if I stayed home instead of wandering around town with my camera.

I walked Kemmer on the Mine Hill 0.88 miles and we enjoyed the wind from the south and NO forest fire smoke.

Went over to see the progress on the Mackay Elementary School playground equipment install. This equipment is COLOSSAL - several stories high (reference the woman on the right of the photo)!

They still have to pour concrete in all the holes tomorrow and add a roof to the blue poles on the left, but they sent the wrong brackets.

2nd ASCT - Day 141 - October 6 2012

Slept much better last night, but still bothered by leg and foot cramps. If I remember quick enough, I can flex my feet toward my head and avoid them.

Woke with a cramp in my gut. I think Zolinza shrinks all of your tissues. I'm not fond of Zolinza. Today is Day 5 or 14 in Cycle 2 for me. I'll continue to take it and hoping there is a  new drug in my future after my University of Colorado Hospital follow-up appointment on 15 Oct 2012.

I spent the day taking photos of our new Mackay Elementary School playground equipment installation via a Lowe's grant. Many community volunteers came out to help and worked HARD all day. I went home mid-day for a nadir. Only 1/2 finished by end of LONG DAY.

Stopped by the American Legion Auxiliary Rummage Trailer to help sort donations for about an hour.

Came home and had another nadir and was in bed early. I'm weary.

2nd ASCT - Day 139 - October 4 2012

Up early AGAIN - not sleeping well at all - bothered by neuropathy, AND leg/foot cramps TERRIBLE. My right foot went in to some sort of SPASM that I thought would KILL ME until I was able to stretch it out.

Drove my father to his appointment in Blackfoot, Idaho. He had a follow-up ultrasound of all the arterial stents he has had placed in his legs since June 2012. We took his wheelchair today and it was a lot easier on both of us getting around between the hospital and the doctor's office right across the street.

After the ultrasound which took about an hour, we saw David Shelley, MD (Interventional Radiologist)  who explained that Dad's stents are all open and he now has good blood supply to his legs and feet. Here is a diagram showing the approximate location of the stents (yellow lines). The stents can only be 6-7 cm long according to the FDA, so a lot have to be placed if the occlusion is long. Dr. Shelley said the swelling in Dad's legs and feet is probably the result of better blood flow to his legs and to be expected - the compression socks are fine to use. We are to watch for coldness and/or pain in his legs and feet which would signal a stent has been occluded and would necessitate an IMMEDIATE RETURN to Dr. Shelley.

Drove home to Mackay arriving just after 3 PM. Walked Kemmer to get my mail. We had our first freezing weather last night - woke to 24 degrees and it warmed up to about 55 this afternoon.

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 125 - September 20 2012

My tongue seems a tad less dry and my taster is working a tad better - but, not totally - as I come off of Zolinza (vorinostat). The neuropathy in my left foot and leg continues and interferes with my sleep.

Had a really busy day. When I went to check on my father (age 91), he told me that his left leg was really painful. He had an arterial stent placed in his left leg on Tuesday, 18 Sept 2012. So, I called his doctor in Blackfoot, Idaho who wanted to see Dad as soon as possible.  We drove the 85 miles to Blackfoot and checked in at Bingham Memorial Hospital for an ultrasound of his legs. We didn't have an actual appointment time, but we didn't have to wait at all! After the ultrasound, I wheeled Dad over to the David Shelley, MD (Interventional Radiologist) office across the street. Again, we did not have to WAIT and Dr. Shelley met with us. Evidently, the little sponge-like thing that was put in to prevent bleeding on 9/18 has shifted a tad and is partially occluding the stented artery - but, there is still blood flow. It takes about 3 weeks for the sponge to be reabsorbed by the body. This news relieved both Dad and I. We won't have to worry unless the pain REALLY INCREASES and/or his leg and foot go cold to the touch. So, back in Bart and heading home to Mackay!  We were only gone a total of 4 1/2 hours and 3 of those were driving.

It really was a miracle visit - no WAITING at any point! Bingham Memorial Hospital advertises that you will be seen quickly and every time we have been there - that has been the case!

Our forest fire smoke CONTINUES and prevents all out-door activities - poor Kemmer hasn't had a real walk for days!

2nd ASCT - Day 124 - September 19 2012

Up this morning at 2:30 AM wide awake. Worked on computer files and getting items printed for people.  Had just 2 charley horses in the night and not as bad as previous, so maybe the Celtic Sea Salt did help.

The forest fire smoke continues THICK in the valley and no walk opportunity. Stayed in the house most of the day except to check on my father at his house a couple of times, take him his mail, and do his dishes. He has a little bit of pain with walking, but is doing well overall.

I took 10 mg dexamethasone today and now I don't take anymore until next Tuesday, 15 Sept 2012 when I get my weekly Velcade again. Since I'm on this weekly schedule now, I am going to have to work out my sleep better or I'll always be tired.

I sent my DNA sample into ancestry.com a few weeks back and got the results today. It is very interesting and they provide you with so much data to peruse.

Around 2:30 PM, I was overwhelming tired and took an hour nadir (nap). It's no wonder since I was up at 2:30 AM this morning.

Haven't been able to see the stars at night for several days. Usually, this is what I see out my south facing bathroom window at night - Orion! This is my actual bathroom window.

2nd ASCT - Day 122 - September 17 2012

Took the last of my Cycle 1 - 14 days of Zolinza (vorinostat) 400 mg today. Wondering if my taste will return over the next 14 days off before I begin Cycle 2.

The air is so dense with forest fire smoke today that I stayed inside all day with my HEPA filter. Got a lot of computer work done and calls made. Had a nice afternoon nadir (nap) and should be rested for my trip to St. Luke's Hospital MSTI in Twin Falls, Idaho tomorrow. Hopefully, the air will be clearer in the Magic Valley.

Can barely see Mt. McCaleb (above) and it probably just 5 miles away. Looking the other direction, the Mine Hill is a tad more visible, but not much.

This afternoon's air quality report from Challis, Idaho some 55 miles north of Mackay, Idaho. The air quality has been UNHEALTHY all day. We don't have an air quality monitor here.

2nd ASCT - Day 72 - July 29 2012

Walked on the the Mine Hill with Jani and the dogs this morning. We went 2.06 miles at a brisk pace. I was CAREFUL to watch every step, so I wouldn't take another tumble. My head is healing, but still sore. My right ear hearing loss has improved. I still don't think I'm hearing as well out of my right ear, but I'm pretty sure it was just fluid in my middle ear which is getting better each day now.

The happiest dogs on earth - Zoe, Kady, and Kemmer.

 This is the location of my tumble on 20 July 2012 resulting in my head laceration.

Jani's head bump is healing and mine is hardly noticeable with all the wrinkles~

Jani worked on cleaning up Paco's truck and rolling walker today.

 And, my lifelong friend, Vickie Mae Johnson Northrop stopped by for a visit!

I drove to Idaho Falls (200 miles roundtrip) BY MYSELF yesterday to get my famciclovir prescription (prevents shingles) refilled. I did fine - a good practice round for when Jani departs for Colorado the second week in August.

It will be a week or maybe 2 until my continuing chemotherapy is figured out with insurance, so I'm just going to enjoy myself until then. I have been energy and didn't even nap today. However, I did go to bed just before 8 PM.