UCH Follow-up Appointment in Aurora Colorado Day 249 After 2nd ASCT - January 22 2013

Jani and I went to UCH (University of Colorado Hospital) this morning and had my lab values along with my monthly SPEP blood tests drawn via my Bard Power Port. Per usual, my goofy Jani helped with the wait time.

 Who says two Polish girls can't fit in a single recliner???

RN Cara had me turn my neck to get the blood to flow out of my port.

My white blood cell count is even lower than last week at 1.9 (norms 4.5-11); hemoglobin slightly lower than last week at 9.0 (norms 12-16); platelets higher than last week at 106 (norms 140-440); and ANC (absolute neutrophil count) lower than last week at 1.0 (norms 1.9-8.8). This means I still need to protect myself with a mask and good hand washing.

My kidney function blood tests continue normal with a creatinine of 0.98 (norms 0.52-1.04); BUN 11 (norms 7-17) and GFR 58 (norms less than 60). 

My immunoglobulins ( reflection of my immune system) are still pretty much non-functioning on Day 249 after my 2nd Autologous Stem Cell Transplant). I asked when they will recover and I'm not clear, at all, when this will (if ever) occur.

The multiple myeloma SPEP blood test take several days, so I'll have to wait on those results per usual.

Had a nice visit with Dr. Clay Smith (UCH) and he answered all of our questions. Dr. Smith thought I looked tired, so at least we are on the same page with that - I am tired. He thinks this probably due to my hemoglobin value of 9.0 (norms 12-16).

He thinks I need to forego the added Cytoxan 500 mg weekly to see if my blood counts will recover. And if they do recover, maybe add Cytoxan 300 mg weekly. Might want to reduce Revlimid 10 mg to 5 mg, but he wants me to do one change at a time so we can see what happens. Dr. Smith thinks I should see a dermatologist for the small bump on my forehead and get it biopsied - oh joy. Continue on Fragmin 15,000 unit injections - I HATE those injections ONLY BECAUSE The pre-filled syringe needles are DULL DULL DULL! I should write the company a letter! 

Can continue dex schedule of: Wednesday's 20 mg; Thursday's 4 mg; and Sunday's 10 mg for a total of 34 mg per week.

As for the small bump on the right side of my forehead, Dr. Smith advised me to see a dermatologist and have it biopsied. 

Need to get another bone marrow biopsy in about a month to check where I'm at since I am a non-secretory or hyposecretory multiple myeloma patient. This means that my cancerous plasma cells don't send the usual blood test elements in to my bloodstream. Hence, I have to be followed with bone marrow biopsies - I've had nine (9) in 19 months since diagnosis May 2011. I told Dr. Smith I wouldn't have a bone marrow biopsy again without conscious sedation and they don't offer that option at UCH.

I really like Dr. Smith and he has an excellent memory. Me and Dr. Clay Smith, January 22 2013.

Jani and got hamburgers at the UCH Cafeteria and ate them outside in the brilliant, warm sunshine.

Waiting at Valet Parking UCH.

 Temperature at UCH this afternoon 66 degrees - felt wonderful!

2nd ASCT - Day 26 - June 13 2012

Some of my UCH BIC RN's. Left to Right, RN Sarah, me, RN Erin, and RN Kristin - all HIGHLY SKILLED nurses!

2nd ASCT - Day 6 - Room Photos May 24 2012

Jani has been printing out photos of Mackay, Idaho and many of our past adventures and posting them on the wall of my UCH Room 1126 with museum putty so it won't damage the walls. I LOVE THEM!

2nd ASCT Day Minus 1 - May 17 2012

My labs are better this morning after my 2 units of blood last night.

NOTICE NOTICE - I'm free of the IV pole and pumps!!!! If I can continue to drink by mouth adequately, I will only have to be hooked to the IV Pole when I received my Acyclovir to prevent shingles and Kytril to prevent nausea - Yippee~

Maintenance came and cleaned the air ducts in the ceiling of my bathroom and room this morning. Joe "Maintenance Man" even took the nurses computer for charting and had ALL the dust inside it blown out...so, I'm SET for a heading to a zero white count!


While Joe "Maintenance" worked in my room, I walked on the treadmill for 15 minutes for 0.53 miles. Made my back hurt and I had to take a pain pill afterwards.


Advanced Care Partner Joe on May 17 2012.

2 ASCT Day Minus 5 - May 13 2012

I tried a new breakfast entree here at UCH.  It was an egg white omelette with spinach, onion and tomato and bacon with raisin bran cereal and a "Scandie" protein shake......all tolerable.

  

Here are RN Yuki and RN Breanne changing shifts from May 12 to 13, 2012

RN Yuki takes a blood draw from my PICC line.  This happens twice a day at 4am and 4pm.

One of the new chemotherapy drugs I have been getting daily - Carmustine (BICNU) 474 mg every 12 hours.

Here's Jani indicating Room #4 since we arrived on Friday, May 11th, 2012.  Initially we were in an exam room (Room#1) for two hours while we waited for our room to be cleaned.  Room #2 was on the Oncology side (carpet in the hallways of the 11th floor), because there was no available room on the Transplant side.  Following one night there, we moved to Room 1132 (Room#3) on the Transplant side and also on the "cold" side, which is on the north side of the building.  In addition, this room was located right by the doors that separate one hallway from the nurses station so they were in constant use....and therefore quite noisy.  So on Sunday I was given the opportunity to move to the "hot" side to Room 1126 (Room#4), which is in a much quieter location.  Home at last for a minimum of 21 days, depending on how things go.

Jani and I in our new room.

We are having some fun now!!!!

Auf wieder bye bye Jani....see you tomorrow!

2nd ASCT Day Minus 6 - UCH Inpatient Night May 12 into May 13 2012

Had a good night. My UCH Room 1132 is right across from the doors to the secured kitchen and area where  the nurses pick up the medications for the patients. The doors BANG closed each time used. I've suggested the doors have new quieter closures added and that I be moved to the other side of the hallway away from the doors. My RN Brianne told me that she would pass my request on to her charge nurse.

Admission UCH - 2nd Autologous Stem Cell Transplant Day Minus 7 - May 11 2012

Jani and I drove down to the University of Colorado Hospital (UCH) located on the old Fitzsimons Army Base in Aurora, Colorado. 

Jani brought the extra specific 30 million year old rock key chain that Ron made us for luck!.

Here is a photo of the Fitzsimons area circa 1999 when it closed and was purchased by the University of Colorado Hospital.

We had been instructed to arrive at noon and we did. Unfortunately, my Room 1118 was not yet available and we were escorted to the 11th Floor Treatment Room to wait. Finally, 2 hours later, we were taken to Room 1118 directly across from the Nursing Station/Pharmacy Area.

RN Lindsey drew my blood and got the tubes sent to the lab. My white blood cells count is actually NORMAL for the first time in a long time at 4.2 (norms 4-11.1); My hemoglobin is at 10.3 (norms 12.1-16.3) which is low, but high for me; and my platelets are normal at 188 (norms 150-400) so I will still need to take my daily Fragmin 15,000 units injection because of the blood clot in my heart.

 My urine looks good too.

They took me to get yet another chest x-ray (radiology is located in the basement, so a transport guy named Michael gave me a deluxe ride down and up in a wheel chair). I just had one last week.

Jani ordered a bean burrito with the sauce on the side for me to eat and it had arrived while I was gone - However, the sauce was NOT on the side. The nurse heated it up for me in the microwave they keep LOCKED up somewhere - only staff have access. I also had some melted vanilla ice cream (small cup). I'm still have a somewhat difficult time eating because of the canker sore on the side of my tongue. They are going to start me on Acyclovir intravenously 3 times a day to beat the canker sore down and to prevent shingles.

RN Lindsey admitted me and I did her vital signs - lots of laughter which was fun!

Jani worked for hours getting my new Verizon hot spot wifi to work and I'm so proud of her - she gotter-done! UCH has internet access for patients and families, HOWEVER, it has lots of limitations like I cannot receive nor send email through my usual Outlook software program and have to use my WEB MAIL account from my internet provider in Idaho which does not have my address book in it and simply is NOT Outlook. In addition, UCH blocks all downloads from iTunes, videos from Facebook, videos from YouTube, anything streaming. Soooooo, at any rate, Jani researched the Verizon hot spot which you pay as you use gigabytes and it is so neat. I can actually watch Jani and Robbyn's satellite television in Greeley, Colorado now as if I was there in the room. UCH has television with very LIMITED channel selection and now with the hot spot, I can watch the GOLF Channel, BRAVO, etc.

We walked for 15 minutes in the hallway for 0.53 miles. I took my trusty IV pole along.

My 1st chemotherapy was hung at 7:50 PM and is to run 2 hours only. I guess it is caustic stuff and I had to have my vital signs taken every 15 minutes for 2 hours after RN Kim (night nurse) got it started. Prior to the start of the Carmustine IV,d RN Lindsey gave me IV Kytril, IV Dex 20 mg, and an Ativan pill. The dex and Ativan must have countered each other, because I wasn't too wired nor tired. She also gave me Velcade IV. 

Tomorrow, it will be 2 different chemotherapy agents intravenously twice a day.

My canter sore on the side of my tongue lingers.

Discharged UCH 5:50 PM April 17 2012

Well, I was able to leave UCH at 5:50 PM April 17 2012 after my 2nd Cycle of VD-PACE. Swollen with extra fluids, but leaving as RN Kiea discharges me. I will be filling in my blog in reverse as I re-orient myself to the computer.

Another Day At Black Rock and Discharge From Inpatient UCH - March 20 2012 at 11:50 PM

My mind is totally clouded from Thalidomide. I can't think at all and I am miserable. I took 200  mg of Thalidomide again today - but, if I feel like this tomorrow, I'm not going to take it. I cannot live like this.

I ate an apple to counter the effects of the chemo - even though I cannot taste anything.

We had to get PICC Line home care teaching. Because of the placement in my left upper arm, I only have one hand to work with - so, Jani is going to go my heparin 10 USP flushes daily at home.

These are Jani's hands doing the flush for the first time - she was an awesome learner and did really well with RN Angela's assistance.

I have to take a lot of medications many times a day - I can actually get this whole cup of meds down all at once...at diagnosis, I was often unable to even swallow my daily calcium pill...

Jani packed up my things and took them out to Bart (2006 Honda Pilot) for our trip home once I'm discharged tonight. All that chemo on the IV poles has to run in before we can leave. That will be 96 hours of continuous VDT-PACE chemotherapy.

Finally, all the chemo ran in and RN Angela came to detach me from the IV pumps and pole. Hurrah.

We were discharged at 11:50 PM on March 20 2012. Drove home to Greeley, Colorado arriving home after 1 AM March 21 2012. My mind is mush and my guts raw, but at least, I'm going home. I've gained 11 (eleven) pounds since admission despite 2 days of Lasix, but they assure me that I will eliminate the extra volume.

We have to return to UCH on March 22 2012 for labs.

Walking at UCH 11th Floor Inpatient Unit - March 18 2012

I walked a couple of times on the 11th Floor Inpatient Unit at UCH as briskly as one can tethered with an IV Pole covered with pumps and chemotherapy. I used my iPhone to track the walks which cannot be a total loop - out and around and back again only. Looks strange to be shown walking out in "air".

Jani spent the afternoon and evening with me.

UCH Breakfast - March 18 2012

First 24 Hours of VDT-PACE - March 17-18 2012

My night nurse, Brianne RN is a 2009 University of Northern Colorado graduate.

The man of the hour, Aide Jerry, knew everything about the bed, the lights and how to control them from the bed, and the television - he even gave me valuable iPhone tips!