Relapsed High Risk Myeloma - Update July 2 2013

Jani and I arranged to have Andrea Marinac come and stay at the house with our 3 dogs and her cute little dog, Koko since we were anticipatingag a 2-day stay in Twin Falls, Idaho with a motel stay to begin Cycle 3 of Bendamustine, Revlimid 5mg/Dex 40 mg. 

My chart below may not be correct - I have to study the original documents.

We arrived in Twin Falls just in time for my 9:40 AM appointment. Everything was running late in the MSTI Infusion Center. Had my blood drawn and then we waited in the examine room while they searched for the results of my bone marrow biopsy done 26 June 2013.

Dr. Padavanija came in and said the bone marrow biopsy results weren't any better - at least 95% and/or 100% plasma cells. However, the M-Spike had dropped from 1.3 to 1.2. I didn't get any hard paper copies of the bone marrow biopsy results and will have to wait until next week.

My white blood cell count (fights infection) is low, but okay for me at 1.9 (norms 4.5-11); ANC (absolute neutrophil count determines if I should wear a mask or not) is low, but okay for me at 1.24 (norms for 1.9 to 4.8); platelets MISERABLY LOW at 17 (norms 140-440) and I have not been on any chemo for the last week. They don't like to intervene with a platelet transfusion until the platelets drop below 10 because you make antibodies against platelets and they only last 1-2 days in your body; They did not draw a LDH today.

My Chem Panel was good for my kidney function - continued mild kidney failure.

I continued back to the MSTI Infusion Room for my monthly Aredia 30 mg intravenously. I remembered to take my Claritin and Tylenol by mouth. This always helps the aches and pains that Aredia can cause post-infusion. They cannot tell you take Claritin/Tylenol because no evidence based (research) data exists on its use - but, IT has ALWAYS helped me with Zometa, Aredia, and Neupogen infusions.

While I was infusion, Dr. Padavanija called Clay Smith, MD at the University of Colorado Hospital. He was involved in an emergency, but did get back to Dr. Padvanija. Since the Bendamustine/Revlimid/Dex doesn't seem to be working, they decided I should switch to:

Option: carfilzomib intravenously 2 days in a row/pomalidomide 21 out or 28 days orally/dex 40 mg weekly

I've been on both of these chemotherapy medications before, but not in his combo.

Summary of Chemotherapy Agents I've Had Since Diagnosis 23 Months Ago:

1. Revlimid (lenalidomide)
2. Velcade (bortezomib) 
3. Decadron (dexamethasone)
4. Thalidomide (took a couple of days and discontinued due to neuro complications)
5. Cisplastin
6. Adriamycin
7. Cytoxan
8. Etoposide
9. Carmustine
10. Cytarabine
11. Melphalan
12. Vorinostat (Zolinza)
13. Carfilzomib (Kyprolis)
14. Pomalidomide (Pomalyst)
15. Bendamustine
16. Carfilzomib Kyprolis)/Pomalidomide (Pomalyst)/Dex

I will still require "rescue blood and platelet transfusions as my platelets are not not likely to recover on this chemo cocktail. They will have to get my medical insurance approval first. That, along with 4th of July 2013 Holiday probably will delay the start until next week. The carfilzomib (Kyprolis) is given intravenously 2 days in a row and the pomalidomide (Pomalyst) is given by mouth for 21 out of 28 days.

After the Aredia ran intravenously, Jani and I went to get my hair cut. My hair has been looking like a very messed up Einstein look.

Taco Bell and Shopko. I needed shorts for a "michelin-tire-sized" girl.

On the way home, we saw a grass fire near Richfield, Idaho, called the Jim Brown Fire (below).

Then, once in our Big Lost River Valley, there was a larger fire just south of the King Mountain roads (I think they are calling it the Beaver Creek Fire). It was raining north of the fire in Leslie, Idaho - so, hopefully the moisture will go south and put the fire out.

My post-hair cut look once home - my post-chemo hair continues to have its own curl and fuzz to it, so it is HARD to control - but, my ugly Einstein look is better.

We had dropped Jonah off at M&C Lube for an oil change when we left town, so we stopped so I could pick him up and drove him home.

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.

Relapsed High Risk Myeloma - Update June 13 2013

Still feeling the energy effects of my extra red blood cells, I drove my father to Bingham Memorial Hospital in Blackfoot, Idaho (85 miles each way) for a follow-up ultrasound of the arterial stents in his groin and legs. 

I did lots of waiting in the car and we were gone all day.

Thankfully, Dad's stents are still open allowing blood flow to his lower legs and feet.. There has been some narrowing in the stent area flow since his last assessment 6 months ago. Dr. Shelley will want to check the stents again in 5 months or sooner if he has any PAIN. If the stents have narrowed further or meet some number Dr. Shelley measures on the ultrasound, Dad would have to have another procedure done around mid-November 2013. Before the arterial stents were placed, Dad had swelling of the lower legs and feet which we thought were congestive heart failure - not the case. The arterial stents have solved all of the lower leg and feet swelling.

We were back in Mackay by 4:30 PM. I was very tired, had some dinner and and went to bed at 7 PM. I have a pain in my left frontal sinus area - hopefully, it is not infected again. No nasal drainage, so it is hard to tell. Could be from the blood transfusion.

Today is Day 13 of Cycle 2 Bendamustine/Revlimid 5 mg/ Dex 10 mg every other day.

Relapsed High-Risk Myeloma - Update - May 30 2013

I will be getting my Cycle 2 of Revlimid 5 mg tomorrow via FedEx home delivery - at least, I hope, I get the delivery. Monthly chemotherapy deliveries at home are always hard here in rural Idaho - but, I'll keep my fingers crossed for tomorrow. I'll begin Cycle 2 Revlimid 5 mg on 4 Jun 2013 for 21/28 days.

Started our day early by celebrating Gretchen Lawrence's Birthday a few days early at Paco's house. Gretchen is Paco's caregiver. We had a cake for her, but somehow, I missed taking a picture of it. We are ALL SO APPRECIATIVE of Gretchen's friendship!

Jeff fixed my bathroom fan/light combo - he can fix anything.

Jani weeded along the rocks in the front yard much of the day - that girl has boundless energy.!

I picked up the mail at the Post Office and stopped at Ivies for potato salad ingredients. Carol and Jani had to go back to the store, because I bought the wrong sized potatoes. None of us know how to make potato salad like our Mom made, but, Carol and Jani were up to the attempt today....so, from my one-with-the-sofa living room view, I watched and did some "official tasting".  I tried to call Cora Lockie for recipe hints, but was unable to reach her. Cora makes a potato salad very close to our Mom's recipe.

In the end, let's put it this way - we were close - but, the potato salad is NOT EXACTLY Mom's - we'll keep working on it down the road. We like the sweet pickle variety!

We walked the dogs around the block - my first walking outing in a long time and I really enjoyed it.

Nick wanted to go on a 4-wheeler ride and SO DID KEMMER. Nick went, but Kemmer had to stay home. I want SO MUCH to be able to ride my 4-wheeler with Kemmer, but 31 platelets may just not be enough to prevent any bleeding that might occur from bumping, etc!

Nick's Dzadzi (grandfather in Polish) ordered him a locally made birthday cake for tonight and we had an early party for Nick who will celebrate his actual 36th birthday on 3 June back in Austin, Texas. 

2013 Mt. McCaleb Cemetery Book Displayed Memorial Day - May 26 2013

Jani and Robbyn finished up the final Mt. McCaleb Cemetery Book Alpha List for Memorial Day 2013 this morning. Then, Jani and I drove the updated book out to the cemetery, cleaned the little kiosk where the cemetery book is kept, and placed our "work of art" in its place.

Judy Malkiewicz placing the 2013 Memorial Day Cemetery Book in the Smith Kiosk at the Mt. McCaleb Cemetery, Mackay, Idaho. 

We put up signs (yellow) directing people to the Mt. McCaleb Cemetery Book location. The Mackay Cemetery Board is going to vote on a more permanent sign indicating the location of the cemetery book in the Smith Kiosk that Earl Lockie has made. However, it was not ready for this Memorial Day.

Contents of the covered cemetery book case (2013 Memorial Day Cemetery Book, scratch paper and pencils, cemetery plat maps, and an article about the Mt. McCaleb Cemetery Book burning up in April 1938 when Mackay City Hall burned to the ground - limiting the accuracy of the cemetery book today between 1901 and 1938.

Jani and Robbyn did all the walking in the cemetery looking for the veteran's headstones, while I did what people with very low platelets do BEST - one-with-the-sofa. 

However, I think my platelets may be increasing some - I haven't had any blood from my nose or throat for several days. I'm on Day 18/21 of the Revlimid 5 mg and continuing every other day Dex 10 mg. My energy seems to be a tad better too, especially in the morning when I'm able to feed the dogs, unload the dishwasher, and pick up the house. I'm go Tuesday, 28 May 2013 to have my blood tested at the Lost Rivers Medical Center. If the values are okay, I will not have to continue on to St. Luke's Hospital in Twin Falls. If the values are too low, we will continue on to St. Luke's for "rescue transfusion(s)".

Drove Jani, Rob, Bonnie, and Kris on a Mine Hill tour above Mackay in Jonah. I NEVER GOT OUT OF THE TRUCK - I forgot my camera card, Jani's camera's battery died, Bonnie only shot video, and Kris didn't have a camera ----- oh well....here is an old photo.

Jani, Robbyn, Bonnie and Kris saw a bull moose on their walk with the dogs this evening.

And a short video of the same moose later at his link: 

Again, I did what I do BEST while they walked - one-with-the-sofa.

Relapsed High-Risk Myeloma - Update May 17 2013

So, how do I feel? Just to remind you,  I'm in Cycle 1 of Bendamustine/Revlimid/ Dex, which began 7 May 2013. I have only 5% normal bone marrow function with 95% plasma cell infiltration.

1. You only received the Bendamustine IV Day 1 and 2 of the 28 Day Cycle.
2. This is Day 11 of Revlimid 5 mg on the 21 day cycle. I seem to be tolerating the Revlimid okay except for days of diarrhea treated with Imodium, followed by constipation, etc.
3. I continue to take 10 mg of Dex every other night. I forgot to take my Dex one "due night" 16 May 2013 and the next day I felt like a person made of stone - could barely move around and get from laying or sitting to standing - it was REALLY HARD. All of my bones hurt, especially my left arm with the hardware and screws and by back - so, I'm NEVER going to miss my Dex dosing again, even though I look so puffy and have the appetite of an a wolf.
4. I will finish my Z-Pack antibiotic for the sinus infection tomorrow 18 May 2013. I've had thick - copious - NASTY drainage (I'll spare you the photo, but you know I have one) and I might need to ask Dr. Padavanija for second round of antibiotics to clear this up a bit more when I see her again 21 May 2013. The terrible pain I had in my left sinus area is much improved, although I still have a bit of left-sided neck - headache.
5. Holding Aspirin 81 mg while platelets are so low.

Amazingly, I feel pretty well - especially in the mornings. I am sleeping better now that I am taking 5 mg of Xanax at bedtime. 

I have to be careful since my platelets are only 18 (norms 140-440) not to bump myself, fall, or do anything that might start bleeding, because it is unlikely we could get it to stop and I'd bleed out OR have a stroke - so, I've been doing a lot of couch potato computer work and watching Jani and Faye WORK around me!!! and I mean WORK - 2 days of cleaning.

BED CHANGER - So work work work was the order for the day.  Here is Faye, the changer of beds!

TOILET CLEANER.....and the cleaner of toilets!

TRANSPORTER - And of course transporting cleaning supplies.

LAUNDRESS - Here's Faye tending to laundry duties!

BUSH PLANTER - Faye the consummate gardener.

POOPER SCOOPER - Faye tends to tidying after three golden retrievers.

LAWN MOWER - Here's Faye mowing the lawn, appropriately attired in boots with adequate eye protection.

WEED WHACKER - And no lawn duty is ever complete without expert trimming.

FLOOR WASHER - Here's Faye relishing washing the kitchen floor on her knees!

SCANNER EXTRAORDINAIRE - Faye, who is also technologically gifted, helps with scanning 9 million documents for Judy's genealogy projects.

VACUUMER -And now it's time for vacuuming and vacuuming and vacuuming....remember the 3 trievers aka hair-balls!

DISHWASHER - Faye is also an expert dishwasher!

CARWASHER - Faye's talent extends to washing Jonah.

SLACKER - Faye get a very very brief break and a tiny yogurt snack - aren't we generous!

FAYE, Ph.D. - Faye inherits Judy's regalia cap - looking smart and so multi-talented!

And with all the work complete, now it's time for some farewell photos.

Until we meet again dear Faye.

And now the CONTEST 

This is a REAL CONTEST

Some of the Faye photos were staged and some were real. Which tasks were STAGED?

Below in the "COMMENTS", list those activities that you believe were staged. It's okay to be Anonymous in the comments, if you win, I'll get your info later.

The 1st person to correctly list the staged activities, will win this authentic MACKAY, IDAHO one size fits all - cap (will be mailed to you only if you live in the USA).

All good adventure stories need a CONTEST!