2nd ASCT - Day 115 - September 11 2012

A year ago today, I was getting ready to be admitted the next day to the University of Colorado Hospital for my first autologous stem cell transplant. A lot has transpired since then. I'm still on this "Adventure with Multiple Myeloma" and who knew (or knows) how it will go. 

For now, I'm feeling pretty well, able to care for myself, and accomplishing most things I want to do. Trying to enjoy each second of each day.

But, back to NOW. 

I slept terrible and woke early at 4 AM. I was terribly bothered by the burning neuropathy in my left foot and leg radiating to my groin. I finally had to take a 1/2 percocet to get some relief. I hate drugs because they really interfere with my sleep, so I avoid them, if I can.

I finally got up and did what I do BEST - MAKE LISTS! My mind seems less able to remember little things, so I decided lists were in order. Bare in mind, I have ALWAYS been a list maker.

I wrote a note to my oncologist at St. Luke's because I did not have an appointment with Dr. Padavanija today, as I was just scheduled in the lab and infusion center. My note (I wonder if she could tell that I was on Dex?)

11 Sept 2012

Notes to Dr. Padavanija

1.    Velcade dosage change ? due to increasing neuropathy in L foot, leg, and fingers. Experienced as like stepping on a HOT IRON and radiating up the back of my leg behind my knee (much increase sensation at this point, waking me at night, necessitating ½ Percocet), and continuing to radiate up to my groin area (but, not as burning in the groin). I’ve rated the neuropathy as a 3 earlier, but would rate it 6 now. Not anxious to take more meds to dull neuropathy sensation. If you’d like to consult my UCH transplant team – call my RN Transplant Coordinator, Lindsey McMenimen and she can get an almost immediate answer for you.

2.    Zolinza Experience (started 4 Sept 2012 and due to end 17 Sept)

·      HA first night, but resolved with ½ Percocet

·      Dry mouth and very thirsty (have to drink 2 bottles of water each night)

·      Esophageal Reflux x2 – SUDDEN with no nausea (none after 1^st 24 hrs)

·      Very full gastric feeling all the time

·      Awareness of pounding heart without increase in respiratory rate

·      Increase in blood pressure (140’s/high 80’s)

·      Many (3-5) soft formed stools daily, but no diarrhea

·      A return of my post-shingle pain - right-sided at the lower scapula level from mid-line around right side to front without skin lesion outbreak

·      New leg cramps and charley horses in both legs and feet when stretching in bed

·      Decreased memory – drawing blanks (new)

·      Increasing fatigue, but still able to do all activities

3.    Oral Thrush (started 7 Sept 2012)

·      Tongue very sore and coated.

·      Was taking Augmentin for root canal (started on 23 Aug 2012), so stopped it on 9 Sept 2012, even though I had one more dental apt scheduled for 10 Sept 2012.

·      Started Fluconazole 100 mg on 9 Sept 2012 (NEED NEW RX). Need help with continuing therapy as tongue is still “not right” and my sense of taste is off (may be Zolinza side-effect too).

Thank you, jm

I drove myself to St. Luke's Hospital MSTI in Twin Falls, Idaho (2 1/2 hours each way). The drive is easy for now with dry roads and with little traffic other than large trucks hauling hay to the dairies in the Magic Valley area, lots of rolling hills and curves (must stay alert), Craters of the Moon National Park, a mountain pass, 3 little farm towns, and you're there.

Had my blood drawn. My CBC is looking good still (note drawn after 7 full days of Zolinza 400 mg): WBC 7.8 (norms 4.5-11); hemoglobin 15.4 (12-15); and platelets 217 (norms 140-440). My neutrophils are high at 80, but that might be from my dental appointment yesterday.
I may have been a tad dehydrated for the blood draw since it is hard to drive 2 1/2 hours and not stop to use the bathroom - I'm going to have to change this in the future and give myself 3 hours to drive, so I'll drink plenty on the way and have time for bathroom stops.

My Chem Panel shows abnormal creatinine at 1.27 (norms 0.52-1.04) and my BUN is on the high side of normal at 17 (norms 7-17). These are kidney function tests and something to WATCH.

I saw Dr. Padavanija's nurse, Kendi, and she told me that they had call in to UCH about the neuropathy and Velcade dosage. So, I waited in a recliner in the Infusion Area and had a nice visit with the lady next to me who was being treated for ovarian cancer - great lady!

I also visited with the St. Luke's MSTI Social Worker who gave me the name and information of a local motel they have an agreement with - in case I ever have to stay over due to weather or how I'm feeling. It's a great deal of $49/night.

I had taken a "chill pill" and was calm during my wait. They bring you lunch at St. Luke's FOR FREE and give you a chose of items. I had the roast beef sandwich, but I didn't like it - so, I only had few bits and a fruit cup. I had my own peanut butter and jelly sandwich in my bag with me - so, I wasn't going to starve.

Suddenly, Dr. Padavanija and RN Kendi came in and told me that UCH indicated that I should probably follow the Velcade package insert on dosage and reductions due to neuropathy. 

Since I'm already on a 1mg/m2 dosage of Velcade, Dr. Padavanija recommended that we go with the Velcade package insert on schedule (see below).

Now, you might ask - why wasn't I on a once a week schedule for the entire month and instead on a twice a week schedule for 2 weekson and weeks off. IT WAS MY REQUEST of Dr. Myint and he thought it might work for me. I requested the schedule so I wouldn't have to make the long drive to Twin Falls for a two week period. I get myself in to so much sometimes.

So, this morning, Dr. Padavanija thought it was best NOT to get my Velcade subcutaneously today, skip my Friday, 9/14/2012 dose and begin WEEKLY Velcade (as recommended) on Tuesday, 9/18/2012. I agreed and departed for Walmart to get my prescription of fluconazole and bactrim filled. Again, Dr. Padavanija is very responsive and communication is excellent.

I stopped at my favorite treat, TACO BELL (now 2 PM) and ordered 2 crunchy tacos - they were delivered looking ideal and perfect. But, I cannot taste - my taster is really in bad shape - so, I took in the aroma of taco and tried to enjoy them.

Heading home in Bart (2006 Honda Pilot) - love him~

The bottom of Tom Cat Summit this afternoon heading home. September 11 2012.

On the way home, I stopped at the Craters of the Moon National Park Visitors Center established in 1924 and was surprised to see how my visitors they had, some speaking foreign languages. I bought a T-Shirt (Jani is groaning) because I like t-shirts.

I also stopped in Arco, Idaho where the Arco Advertiser (newspaper for our Big Lost River Valley) and looked up 4 old obituaries that I had requests for from the historical society. They bring out these big, dusty books and once I find the obituary, I photograph it with my camera and post it on the internet for the people at findagrave.com 

I don't know how and when I took this picture of me at the Arco Advertiser because this was taken with my regular camera and not my iphone which can reverse the image side  but, here it is.

 Our Big Lost River Valley is looking a little less forest fire free. The fires are slowly decreasing due to cool night time temperature and a lot of fire fighters on the lines up there about 60 miles north of us (this photo shows a view from Highway 93 heading north to Mackay, Idaho at Darlington, Idaho.