Relapsed High Risk Myeloma - Update June 6 2013

Slept pretty well last night if I don't dwell on how upset my stomach was - sorry, whine, whine, whine. The intravenous Bendamustine dries my mouth and tongue out, alters my taste buds significantly, and gives me a moderate sore throat. I think, I remember having all of this during Cycle 1 Bendamustine too - but, I cannot find any documentation of it in my blog.

Worked all morning on getting "lists" made of things I need to get done with my paperwork, bills, etc. Just when I think I have it all worked out, I think of something else. Don't want to leave Jani and my family with a paper mess. Met with the Mackay Fire Department Chief, Randy Ivie, to share with him the IDAHO POST NOTE (singed by my oncologist, Jani, and I) - a document that indicates I do not want to be transported out of Mackay if I cannot speak for myself. 

Randy and I  had a good visit. He and his family have been friends forever in my memory. Randy was the EMT with my Gram, Hazel Lundberg, when she died in October 1985 and Randy's son, Justin, was the paper boy that found my Uncle Rex Lundberg passed away in his home in December 1991.

I went for mail and had really nice visits with a number of friends in front of the Post Office. I love that Mackay people take the time to visit and no one "really seems in a hurry".

Kenadi called me from St. Luke's Hospital in Twin Falls, Idaho this morning to tell me my SPEP was ready.Stopped at the Mackay Library and picked up my faxed SPEP Results from the blood drawn 4 June 2013. RN  My M-Spike is still 1.3, but has a  note that it was in the "gamma region", when I have always had "kappa region" myeloma. I'll have to study my past M-Spike reports and call Dr. Padavanija to figure this out.  More on the free lights, immunoglobulins tomorrow.

Beautiful lilac bush in full bloom by the Mackay Library. Our spring and summer weather usually does not arrive until now - so, we are right on time.

Jani worked all day on my lawn with the string trimmer and mowing the two wild habitant fields I have on either side of my house.

Somewhere in there, I squeezed in a two hour nap on the sofa after lunch...slept hard and probably snored LOUDLY~

My Barton Flat Churndasher Ranch Johnson family stopped by with  a treat for me - red licorice! They also had 2 sleeping baby grandsons, Otto, age 2, and Owen, age almost 2 months, in the back seat with the cutest 3 year old granddaughter babysitter, Kinley, in the middle. Kinley has the brightest light eyes - SO CUTE! Their other two granddaughters, Kelsey and Kassidy stayed on the ranch to help their Dad tonight. I've known this family for my whole life and I love watching them grow!

Jani and I went to the Mackay Outlaw Dinner Theatre tonight at the school.  The dinner was pizza and spaghetti. The monies raised are used to put on the annual Halloween Carnival for the school kids each year. The play entitled, "Every Little Crook and Nanny" was terrific fun and the cast did such a nice job with the production. I laughed a lot and that CANNOT BE BAD! Sitting in stadium-like auditorium chairs was hard on me for 2 hours!

I sat next to good friend, Cora Lockie and Lana Pehrson on the other side (missed getting her photo). This is the FIRST activity that I have attempted and completed in the evening in MONTHS and MONTHS. My back hurt from all the sitting in the stadium-like chairs, but I made it through the entire performance. 

2nd ASCT - Day 143 - October 8 2012

Day 7 of 14 Zolinza (vorinostat). My tongue is dry and my taster is almost gone. Luckily, I know my sense of taste will return after I go off the Zolinza. Neuropathy and leg cramps continue along with swelling and retaining fluid in my body and face.

Walked Kemmer 1.38 miles on the Mine Hill. Didn't need to wear the N-95 mask.

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 121 - September 16 2012

Was exhausted and slept well. Our forest fire smoke is BACK - ughhhh. I walked Kemmer on the Mine Hill and wore the N-95 mask...had to...look how  bad it is. We need RAIN or SNOW or something to put those fires out!

Kemmer ran ahead as she does and found a dead skunk. She rolled on it several times before I got there. I am SO LUCKY, because it did NOT smell of skunk...just strongly of DEAD ANIMAL.

So, when we got home, I gave Kemmer a bath in the front yard and de-smelled her. 

Except for being thirsty and having a DRY TONGUE (Zolinza side effect), I felt good today and had pretty good energy.

2nd ASCT - Day 119 - September 14 2012

My DRY MOUTH and TONGUE continue and I cannot TASTE anything that is not SALTY or SWEET. Oh well. I continue to have muscle cramps in my lower legs and feet when I stretch at night - throw you out of bed-like. Stretching helps the cramps. 

I also had an episode of sustained tacycardia (fast heart rate) at 96 at rest this evening. No matter what I did - my heart rate stayed at 119 and I felt tired. I'm going to have to discuss this with Dr. Padavanija at my next appointment, 18 Sept 2012. I'm pretty sure it is Zolinza caused. I looked up the side effects and it can occur and so does HAIR LOSS ~

I went to the funeral of a cowboy I've known all my life this afternoon, Darrell Leavitt (age 86). What a nice tribute! Darrell's wife, Alice (below) survives him.

The funeral was very well attended and the Community Church here in Mackay was FULL. I wore my N-95 mask, hoping I wouldn't "catch" anything in the crowded environment.

2nd ASCT - Day 113 - September 9 2012

On the myeloma side, the neuropathy in my left leg is maybe getting worse and keeps me awake at night. It seems to be radiating up my leg more - even to the groin. Begins on the bottom of my foot like I stepped on a hot iron and travels up just the back of my calf to the back of my knee - and last night to the right inside groin area. I also have thrush in my mouth and continue to take fluconazole which is helping.

Had a nice steep walk this morning on the Mine Hill with Kemmer. 

I misgauged how long it would take me to get in camera focus via the timer that I use each day without falling down and had to do the photo shoot twice :)

On the way down from the 2.40 mile hike, we met up good friend, Dianne Layne Parker again (our grandmothers were long friends). Click on the photo below to enlarge, so you can see Dianne making the ascent to the BLM Road South ridge. It is hard to judge distances in this wide open country.

My new gate closure today ala Ron. It is first-class. We had to enlarge the gate opening earlier in the summer to allow for a mower to fit through.

And my new rain gauge - not that it is going to rain - but we NEED RAIN - so, it might help to have a gauge up. The wind was blowing this afternoon from the south, so the forest fire smoke up north was hardly noticeable.

Friends gave me fresh garden produce today - yummy.

2nd ASCT - Day 112 - September 8 2012

Well, after a total exhaustion during the afternoon and evening, I essentially slept from 3:30 PM in the after noon until 2 AM 
I woke this morning rested and ready for LIFE. And such a varied day I had! 

Started out with an early morning walk on the MIne Hill with Kemmer. We met up with friend, Dianne Layne Parker. We walked 1.38 miles and had a good visit. Our grandmothers were very good friends, Hazel Lundberg (mine) and Pauline Chaney (Dianne's).

After the walk, I rushed to the Post Office to get my father's mail and do his dishes which I do every morning. Then, on to the Custer County Fair Grounds here in Mackay, Idaho for the Gordon Seefried Memorial Benefit Consignment Auction to raise money for the Mackay Elementary School new playground equipment to be installed and Field Trip support.

Here is the $32,000 dollars of playground equipment that Mackay received a via a grant. However, we do not have the money to install it. Any donations would be appreciated. Send to Mackay Elementary School, 400 E. Spruce, P.O. Box 390, Mackay, Idaho (this is the only ad you will ever see on this blog, I promise).  See the school website at: http://www.mackayschools.org/msd_015.htm

From there, I hurried home to change clothes and attend he funeral of a wonderful man, James Clyde Lambert, 91 at the LDS Church here in Mackay. Clyde and his wife who has also passed away were good friends with my mother, Margie Lundberg Malkiewicz. I clean up okay ~ what  a granny dess though ~

Clyde Lambert's memorial table display.

From there, I went target practicing with my pistol with Ron.  Don't worry it is not loaded.

 I even managed to hit the target at 20 yards a few times (see beige target).

Horses waiting for water to be delivered. But, you can see the fire smoke has cleared this afternoon for awhile.

And I took some photos and printed them for the local tree trimmer to send along with his bill.

This job just required removal of dead branches and not much of a trim. Finished below.

Below, a part of my acre...I need a tree trimmer too...but the trees and willows are a wonderful habitat for mule deer, racoons, skunks, voles, and the occasional mountain lion and wolf.

PS, I think I was getting thrush from the Augmentin, so I started Fluconazole last night. My tongue is less sore today and much better - the marvels of pharmacy. The burning neuropathy in my left foot and leg remain BURNING. I may have to ask for a Velcade dose reduction. My post shingles back pain is much better.

2nd ASCT - Day 17 - June 4 2012

Jani packed up all of our stuff and we checked out of the Marriott Residence Inn this morning early. We were both tired because neither of us slept very good last night.

Arrived at the UCH BIC for blood draw at 8:30 AM. I gave a stool sample since I still have a lot of movement south requiring daily 2mg of Imodium.

Then we waited in the exam room for the lab results and my appointment with Nurse Practitioner Karley. I felt weak and tired. I wish I felt better, but today is only Day 17.

My hair is growing a tad (photo with magnification).

My lab results were very good for Day 17. My white blood cell count is 3.1 (norms 4-11.1); hemoglobin 12 (norms 12.1-16.3); and platelets 194 (norms 150-400). Just about the closest to normal labs that I have had for the last year.

My ANC is normal at 2.0 (norms 1.8-6.6)

 My stool sample was negative for CDifficile Toxin, so that was good.

 My diet has been good as my protein and albumin are within normal limits. However, the dietitian has told us that these blood tests are NOT GOOD INDICATORS of nutritional status.

NP Karley spent a lot of time with us and answered all of our questions. She thinks I might have to add compazine to control my nausea. However, I took some compazine after my VD-PACE and it really put me out for too long --- so, I'm going to try to go without it. 

Karley thinks I'm doing well for Day 17 post ASCT and said it will take a long time for me to recover since it is my 2nd ASCT. The sores on my tongue are going to require treatment doses of acyclovir for 5 days (during this time, I will not take Famciclovir). My sick tongue has my entire self sick!