jm's Adventure with Multiple Myeloma: Relapsed High Risk Myeloma - Update July 12 2013

Total Pageviews

Click on photos to make them larger and clearer. New to the blog, the oldest or beginning entries are at the bottom and you read upwards to the most recent date or go to Labels and begin with Entry 1. Use the alpha Labels on right to find topics of most interest to you.







Friday, July 12, 2013

Relapsed High Risk Myeloma - Update July 12 2013

Stayed in the motel last night - sure wish I could sleep solid like Jani does. Jani swears she could not sleep at all until she rummaged through her backpack for a set of earplugs since I was SNOOZING! Every time I was awake, she was ASLEEP and I was awake at least every 1-2 hours.

I had more energy this morning - so, I guess 2 units of packed red cells yesterday helped me.

Andrea Marinac walked our dogs and hers (Koko...little black and white dog on left) this morning and was surprised to discover our dogs do not need leashes...what can I say - they are "almost" perfect pups!

Went through about 1 hour of PANIC this morning at the motel when I could not find my wallet. We tore that motel room apart and I'm sure when the maids came in after we left this morning, they WONDERED OUT LOUD - what did those sisters do in there last night. Jani finally found my wallet between Bart's passage side seat and the console  - "THE LOST ZONE."

We came over to St. Luke's Hospital Infusion Center and I had a complete blood count done. My platelets were even LOWER than they have ever been at 12. RN Leita had to talk to Dr. Padavanija on how to proceed.

My white blood cell count was low at 4.0 (norms 4.5-11) with 20 bands (norms 0-4); ANC normal at 2.98 (norms 1.9-8.8); hemoglobin low BUT SOARING HIGH FOR ME at 10.7 (norms 12-15); and platelets PROFOUNDLY LOW at 12 (norms 140-440) - as low as they have ever been for me. 

Because my hemoglobin was so high, I had no difficulty walking in from Bart (2006 Honda Pilot).




They decided they would go ahead and give me my intravenous carfilzomib dose along with my 10 mg of dex intravenously. I also needed extra intravenous fluid for (normal saline) the carfilzomib. Dr. Padavanija thought it best to boost my LOW PLATELETS with a platelet transfusion today.

Unfortunately, the only available platelets are in Boise, Idaho, which cannot be transported the 132 miles here to Twin Falls before 3-4 PM. Then, the platelets would have to be irradiated before I can receive them. 

Hence, Jani and I are here for a long wait - I'm in the Infusion Center recliner working on blogging. 
St. Luke's Hospital MSTI feeds lunch to their patients FREE from a rolling cart with this nice lady serving.
Jani went retailing AGAIN. The view outside the Twin Falls, Idaho Sportsman Warehouse in to the downstream Snake River Canyon below. It is not too far from the Perrine Bridge where they (very stupid dumb people) base jump.
Looking at the Perrine Bridge over the Snake River Canyon.
Looking downstream on the Snake River toward the Perrine Bridge.

My platelets finally showed up just after 4 PM (232 ml of platelets).
RN Ann and RN Leita checked the numbers on the platelets and RN Letia hung them to run  by gravity...considered my rescue platelets.


History of All Platelet Transfusions Since Diagnosis May 24 2011
  1. Platelet Transfusion March 24 2012 (UCH- University of Colorado)
  2. Platelet Transfusion March 27 2012 (UCH)
  3. Platelet Transfusion March 29 2012 (UCH)
  4. Platelet Transfusion March 31 2012 (UCH)
  5. Platelet Transfusion May 20 2012 (UCH)
  6. Platelet Transfusion May 22 2012 (UCH)
  7. Platelet Transfusion May 10 2013 (St. Luke's Hospital)
  8. Platelet Transfusion Jul 12 2013 (St. Luke's Hospital)

We left Twin Falls after stopping at Taco Bell for a take out dinner. Arrived back home in Mackay, Idaho for the Sammy's Grand Reopening about 7:30 PM where we had caffeine-free root beer FOR FREE.

Judy and Jani Malkiewicz enjoying caffeine free root beer at LOCALLY OWNED Sammy's.
Sammy's gave out free fountain drinks and coffee today for their Grand Re-Opening and new Magee family management acquired from the Marinac family. Tomorrow, they are all set up for FREE hot dogs and hamburgers from Noon to 4 PM. Don't miss is it ! !
Mackay resident, Judy Malkiewicz and employee, Marla Colson.



5 comments:

  1. JM,you are a very strong woman - I admire you for keeping up with your blog while going through this relentless disease, and with a smile on your face in just about every picture at that! I enjoy all the scenic photos of Idaho(such a beautiful area)and of your doggies!

    Stay strong!

    ReplyDelete
  2. i agree with everything writen above you are my inspiration so strong so smart and know so much stay strong. and jani is a wonderful sister your so lucky to have her. Joe

    ReplyDelete
  3. I too agree with the above. Gorgeous photos and a wonderful spirit you have. Keep it up xx

    ReplyDelete
  4. In the face of it all, you maintain your sense of humor and spirit. Big hugs from New Jersey. Terry L.

    ReplyDelete
  5. Thanks Terry L from New Jersey and Anonymous folks for your kind comments. Someone, well, lots of someones have told me that it hard to tell that I am as sick as I am from my blog entries showing my continued adventures here in Idaho...but, I decided right from diagnosis in May 2011 that I was going to live my life as positively as I could. Smiling is always better than whining in my book.

    But, this does not negate the fact that I have but 12 platelets keeping me alive for the moment and a bone marrow 100 percent full of cancerous plasma cells preventing any new platelets, hemogloblin, or white blood cells from being made. Without the "rescue transfusions - I doubt I'd be typing tonight.

    And perhaps the new tandem carfilzomib/pomalyst/Dex will help me...although I'm up tonight with a terrible gut ache taking Kytril (anti-nausea).

    So, the adventures will continue for as long as I have. jm

    ReplyDelete