2nd ASCT - Day 89 - August 15 2012

Slept better last night after I took a Claritin 10 mg. Don't know if that worked or if I was just exhausted...but, I slept.

Walked with Kemmer this morning for 3.32 miles on the Mine Hill climbing up to a ridge over Mackay, Idaho to get panoramic photos showing the forest fire haze in our Big Lost River Valley. This was a climb of 342 feet to an elevation of 6,560 feet or the equivalent of climbing to the 26th floor of a high rise building. The forest fire haze has cleared some, but I still wore my N-95 mask all the way except for one brief photo op with Kemmer. This was my longest walk since my 2nd autologous stem cell transplant (ASCT) on 18 May 2012.

 Click and Double Click on photos to enlarge them.

Wish my arms were longer ~

RN Sandy called from St. Luke's MSTI in Twin Falls and said the vorinostat approval is still in the works with Curascript and they have now involved a supervisor at Curascript. If the medication is approved by my insurance, I will have to wait an additional 5 days as they do not stock the medication. My life is could be hanging on this drug...but, no one is in a HURRY.

2nd ASCT - Day 87 - August 13 2012

After Jani left at 5:15 AM, I collected the things I usually take to clinic/infusion visits in my red traveling bag. And, POOR ME...I had to pack my own cooler with bottled water and make my own sandwich....Jani has SPOILED ME and I  WILL MISS HER!

I drove to Twin Falls this morning and was lucky enough to see a big buck mule deer on the side of the road by the Craters of the Moon and NOT HIT IT!! Only 1 area of road construction with a pilot car - I had to wait about 5-8 minutes.

I arrived before my appointment scheduled at 10:40 AM. Had my blood drawn and the technician told me that I should return to the waiting room while while they ran the blood. I sat in the waiting room reading a sign they had posted, "If you are not called within 20 minutes, tell the receptionist.". My appointment for subcutaneous Velcade was at 11:20 AM. So, at 11:35 AM, I asked the receptionist if they had forgotten me. She told me to wait 5 more minutes and if I were not called, she would call back. I WAITED (not happily). Finally, I told the receptionist to call back to the Infusion Area. She did and told me that they DIDN'T KNOW I WAS WAITING - errrr. and it would be moment because the nurses were taking lunch in shifts with backup from the lab (or something like that). 

Finally, technician Matt came for me and did my vital signs and weight assigning me to Chair 3. About 10 minutes later, RN Brittany came over to me said she was sorry about the mix-up. I explained that I had to drive 2 1/2 hours to get to Twin Falls and had expected to be in and out with the blood draw and subcutaneous Velcade injection....and I HOPED this process would be more seamless in the future. Pretty quickly, the Velcade injection was ready and it hardly hurt this time in my right arm. Velcade subcutaneously is a very stingy sensation and I think it is best to inject slowly which RN Brittany did.  

RN Brittany also printed off my CBC (that's all they drew today, no Chem Panel) and my SPEP (M-Spike) from August 8 2012 for me to take home. My white blood cell count has dropped a tad to 3.8 from 4.2 on Aug 8 2012. My hemoglobin also dropped a tad to 12.7 from 13.1 on Aug 8 2012. My platelets are good at 314 (they were 298 on Aug 8 2012). So, the Velcade chemotherapy is reducing my white blood cell count and my hemoglobin. I need to get the parameters used if they decide to HOLD the velcade because of reduced counts, so I can better understand this aspect. I also need to assure that St. Luke's MSTI Twin Falls is faxing my labs to Dr. Myint at UCH in Aurora, Colorado. I see Dr. Padavanija on Thursday, 8/16/2012 and I'll discuss this with her.

I asked to talk to RN Sandy or RN Kenadi regarding my Vorinostat chemotherapy which they are trying to get approved...A PROCESS THAT NOW HAS TAKEN 3 WEEKS and no answer. Neither nurse was available, but RN Brittany told me she would have RN Sandy call me later.

Got back to Bart and took my Dex (10 mg) along with 81 mg of ASA while I ate my peanut and butter sandwich I brought with me.

Had to wait for the pilot car AGAIN in the road construction area, but I was back in Mackay, Idaho by 3 PM.  Kemmer stayed with Paco (my Dad) and my brother, Jeff today, but she was GLAD to see me. The forest fire smoke in Mackay is VERY BAD today - so, no walk for Kemmer and me. That's the sun almost totally blocked and there is ash falling...so SICK!

RN Sandy from Twin Falls called me at 5:36 PM to let me know that she had called Curascript AGAIN and they are still working on the insurance approval for the Vorinostat. I asked her to call them EVERY DAY until there is a ruling and she said she would.

2nd ASCT - Day 82 - August 8 2012

Drove 135 miles to Twin Falls St. Luke's MSTI for my 8:20 AM appointment with Dr. Padavanija. I left at o'dark thirty and kept an alert eye for deer on the road...always a threat in this county. It is a very pretty drive with varied geographic changes including the Craters of the Moon National Park founded in 1928.

Rolling roads and lots of farm land with ranchers cutting and baling hay right now. Little traffic until you get to Shoshone. That last 20 miles to Twin Falls always has a lot of traffic and RARELY going the speed limit...and they aren't speeding!

I arrived in Twin Falls with just enough time to dash in to Walmart for a rolling cart. Jani packed all my things and lunch and I needed a way to maneuver it all in with me. The cart we used in Colorado was Jani's.

Got my blood on the first poke which is always nice since I have no port access anymore. They drew CBC, Chem Panel, and my multiple myeloma markers. The markers have to be sent to Boise, so it will be a next week before I know those results.

My CBC continues good. White blood cell count 4.2 (norms at MSTI 4.5-11); hemoglobin 13.8 (norms 12-15); and platelets 298 (norms 140-440).

My appointment with Dr. Padavanija went well. She always gives me a lot of time. While I was in the exam room with her, she talked to Dr. Han Myint (my transplant doctor at the University of Colorado) to discuss my continuing chemotherapy. Dr. Myint's note July 18 2012.

We are still waiting on the vorinostat approval from my insurance due to a mix up with a fax delivery. I will get Velcade 1mg/squared subcutaneously on Days 1 4, 8, 11 each month. I will take dexamethasone orally 10 mg on Days 1 and 2; Days 4 and 5; Days 8 and 9; and Days 11 and 12 each month.
When the vorinostat is approved, I'll take it orally 14 days and 14 days off. Hopefully, my blood counts won't FALL too much from these agents, but they will monitor them.

I will also start 81 mg of Aspirin orally today.

This chemo schedule will require that I drive to Twin Falls twice a week for 2 weeks and then I'll have 2 weeks free.

After my appointment with Dr. Padavanija, they took me back to the MSTI Infusion Room - which is very large. It seems even larger than it is with a 2 story ceiling and a floor to ceiling bank of windows on the far side. 8 recliners around a central round nursing area is the area I was directed too. 

A volunteer came by with a quilt for me that I get to keep. I'll keep it in Bart and use it each time I come.

Just like UCH, the infusion area is COLD. The nurse wrapped my area in a heating pad prior to her IV attempt. And, the television is too high for comfortable neck viewing.

My veins were NOT cooperative and I had 4 different pokes by 2 nurses before success. I needed an IV for Aredia (bone building) which they run over 2 hours 10 minutes. I took a Claritin tablet to help reduce the bone and muscle pain from Aredia.

The nurses were surprised that I packed my own lunch because they provide lunch for all patients in the infusion area - WOW.

I was able to leave MSTI around 1:15 PM. Went back to Walmart to pick up my dexamethasone prescription and a few things we needed back in Mackay. I took the dose of dexamethasone in the Walmart parking lot since I had just had a sandwich. I arrived home in Mackay just before 4 PM - a very long day, but I held up. My stomach was already upset form the dex and I took more Zantac which helped.

My brother, Jeff, arrives tomorrow night for a visit and Jani is scheduled to DEPART for her home in Colorado on Monday...oh, how I hate to realize that!

2nd ASCT - Day 76 - August 2 2012

Hallelujah, I finally heard from my transplant coordinator today that Dr. Wolfel (cardiologist) has determined the blood clot (thrombus) in the right atrium of my heart has resolved and I DO NOT have to daily inject myself with FRAGMIN any more...Hallelujah!!!!

I've been well and happy of late. Entered my first crop of apricots from my new apricot trees planted April of 2011 in the Custer County Fair this week and earned a blue ribbon with a lavender rosette (extra merit).

Now, I'll tell you...I was the only one to enter apricots....but, I was judged against all other fruits like apples and cherries. The cherries won FIRST PLACE in the FRUITS. Below is a Shauna Nelson photo showing Jani and I watching the pig show.

My hair is growing slowly. I've been bald for 9 out of the last 14 months, so I'm used to it.

I'm still waiting for insurance approval of my continuing chemotherapy from St. Luke's Hospital MSTI, Twin Falls, Idaho. They have approval for the Velcade, but are waiting on Zolinza (vorinostat). When, they call me with an appointment, I'll start my ongoing chemotherapy. These drugs are VERY EXPENSIVE.