2nd ASCT - Day 16 - June 3 2012 Still At Marriott Residence Inn

Last night, Jani decided that I have taken way too much ATIVAN and I need to put an end to this. My head is totally clouded and I can't seem to process information very well. However, the ATIVAN works well on my nausea. We are going back to Prilosec and Zantac as an substitute.


I had a pretty good night, but I was awake and up several times - with a clearer mind - kinda jealous of Jani in the 2nd bedroom snoozing away. Things still going south, but maybe not as badly.


At 6 AM, I woke Jani to make my breakfast. She got right up from a dead sleep and cooked me scrambled eggs and ham and toast. I LOVE MY SISTER.


My head is clearer this morning for the FIRST TIME - Jani's ATIVAN theory must be the key! There is a good reason they don't want you to be alone.


At 7 AM, Jani insisted that I walk outside since I didn't manage to walk inside or outside yesterday! We walked 0.48 miles very slowly completely the walk in 14 minutes. My pulse soared up to 126, so it was quite a workout.

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.

Day 20 - Walk and HOPE - October 3 2011

I have been pretty nauseated and a little dizzy since I started the antibiotic, Augmentin, for my sinus infection which I have to take every 12 hours. Jani has helped me out a lot by making a meal each time I have to take the pill and it seems to help some - along with Ativan 0.5 mg.

I decided that I didn't want to walk outside today and we walked inside The Timbers empty hallways instead. We also did 2 sets of stairs which are pretty difficult for me - my old strong Mine Hill legs have left me. We only lasted 0.31 of a mile.

The Timbers is located right next to I70 which has a lot of fast traffic on it, so walking in The Timbers parking lot is possible, but I question the air quality there despite wearing a mask. We have driven all around within miles of The Timbers and it hard to find a place to walk outside that looks clean and has no standing water (mold) in catch-all areas. Certainly, if I cannot have potted plants at home, I shouldn't be walking by standing - muddy water areas which seem to be everywhere in Aurora.

Now to the HOPE - I have requested via my Transplant Nurse Coordinator, Dana Godec, RN that I be allowed to move out of The Timbers and move back to Greeley, Colorado with Jani. My platelets are good and my white blood cell count is on the rise - Plus, the air in Jani and Robbyn's neighborhood is so much cleaner than it is here. Dana is going to plead my case at their weekly patient care conference tomorrow (Tuesday) and let me know the answer. Jani and I are keeping our fingers crossed. Jani wants to start packing up our stuff, but I told her that might be the kiss of death to idea - so, here we wait at The Timbers.

jm at The Timbers via Jani's iphone feature, October 3 2011

Day 19 - Afternoon Update - Strolled around Fitzsimons for 20 Minutes - October 2 2011

Jani and I decided to drive over to Fitzsimons and walk around there since the campus is virtually empty on Sunday.

Jani and jm October 2 2011

As we were walking back to the car, I got very nauseated. We came back to The Timbers and I was pretty miserable with nausea all evening - took Zantac and finally Ativan. I'm sure the Augmentin antibiotic for my sinuses is causing this nausea.

Day 12 - Morning Update - Baby Stem Cells Producing Slowly September 25 2011

My new baby stem cells are up to 0.5 this morning at 4 AM September 25 2011. I had a good night and slept with the aid of Ativan and Percocet. My platelets are low at 46, but not low enough for a platelet transfusion (they transfuse for anything below 20), and my hemoglobin is low at 9.8, but not low enough for a blood transfusion (they transfuse for anything below 8).

So, it looks like Jani won the baby stem cell pool with her guess of 0.5 on September 25 2011. My white blood cell count at 0.5 is still too low to calculate an absolute neutrophil count on which is the gold standard value for being discharged from the hospital after a stem cell transplant. My absolute neutrophil count (ANC) will have to be 0.5 for 3 consecutive days before I can be discharged to the Timbers Hotel near the hospital.

Day 6 Morning Update September 19 2011

I had a pretty good night September 18 in to September 19 2011. I continue to be nauseated and nothing seems to help, but with Ativan and Percocet, I am able to sleep through it. I'm also getting used to the hospital routines every 4 hours, and although I cannot sleep through vital signs, blood draws, medication administration, and twice daily weights, I am able to go right back to sleep afterwards.

They started me on another 24-hour urine collection this morning. My 4 AM blood values are on the way up some from the neupogen shot I received yesterday.

I had a nice email from my Fort Collins oncologist, Dr. James Moore, wishing me well with my stem cell transplant. He is such a nice doctor.

Jani texted me a picture of her walk with the dogs this morning - boy, do I miss that!

Kemmer, Kady, Jani, Zoe September 19 2011

Dr. Han Myint and his following (about 8 other people) all dressed in yellow isolation gowns did "rounds" on me this morning in my room. Dr. Myint asked me if I could do a second tandem stem cell transplant based on how I felt now on Day 6 of my first stem cell transplant. I told them that I could if he thought it would add years to my life. He said he had NOT yet decided if I would need a second tandem stem cell transplant. It was so confusing with all the people in the room, I forgot to ask him WHEN and HOW he will make the determination for the tandem transplant.

Later, the Physical Therapist came in and collected my paperwork on how much I have exercised. He also showed me how to do all of the elastic (non-latex) band exercises and I practiced a few of those. They count all of the things I do for myself like showering and brushing my teeth as exercise too. He left and brought me a 2nd band to use and a new weekly form.

JayJay (sp), the dietitian aka the "Food Police" came to visit with me for a long time too.  She had me show her all of the snacks that I have in the room - some I had to explain were Jani's (like the chocolate candy - since I don't do chocolate at all). She thought it was fine that I was using the frozen Lean Cuisines. She actually thought I was eating less than I am - so, she left feeling okay. They will continue to run my IV fluids at 125 cc/hr until my nausea lets up some more.

Day 4 - Morning Update September 17 2011

Had a bit of an appetite this morning and ordered scrambled eggs and dried pieces of potato (they call them Colorado Potatoes).

I was able to eat the eggs and most of the potatoes. I'm still nauseated, but having food in my gut seems to help. If it gets worse, I can ask for 0.5 Ativan which helps and gives me a nap (2 for 1 deal). Still running Normal Saline at 125 cc hour and I like that.

Jani said my dog, Kemmer, finally caught a squirrel in their back yard today - bad for the squirrel, but I'm sure Kemmer was delighted. She has been calmly stocking them all summer. Jani is going to check with the vet if there is some type of shot Kemmer needs now because of the squirrel catch. She has a current rabies and just got the distemper booster yesterday.

Day 3 - Stem Cell Transplant PM Update September 16 2011

Much better control of my nausea with Ativan 1/2 dose and scheduled Zofran. Plus, I have maintenance fluids running intravenously at 125 cc hour which I think really helps me.

Jani came and stayed all afternoon in to the evening with me. She put her organizational gene to good use and rearranged my entire room. I don't know what they were thinking when they built this hospital for patients who would have LONG stays - because there aren't any good places to store anything. Jani brought all of my stuff in big see through plastic bins that she stacks. Jani brought me cold cereal and Silk Milk (I have a lactose intolerance) and that seems to work in my not-so-right stomach for now.  I love my sister~

I walked with Jani in the hallway before she left. We are missing my Transplant Coordinator, Dana Godec, RN who has been out sick since the 9th of September. Wishing her the best.

Good Morning Day 0 - Stem Cell Transplant Day September 13 2011

I had a pretty good night. Slept most of it despite upset acid stomach. Finally, just got up and with the permission of nurse Lindsey, wore a mask and walk up down the hallway for 11 minutes. Afterwards, I worked on my blog updates from yesterday. I'm feeling a tad drugged, so don't worry if I don't make much sense at times.

Lindsey, RN gave me my dose of Velcade chemotherapy this morning at 6 AM - twelve house after the melphalan as ordered along with some Nexium (their substitute for Zantac) and Ativan. Seems as long as I sit pretty head up, I can keep the nausea and acid down. I'm almost afraid to mention that it hasn't been that bad so far ~

I called early to order my breakfast since it takes 45 minutes to an hour to deliver it to the room. Nothing sounds good, so I went with my old standard oatmeal and a side order of cream of wheat - I used to like that when my M used to make it. I wanted a banana, but they said they weren't allowed on the neutropenic diet. My nurses here on the 11th Floor, UCH said they could order me a banana, but they would have to wash it and peel it for ME - fine, just like home when Jani does it :)

Oh well, Lindsey, RN says my counts will begin to fall today and approach 0 for WBC count, so I have to be careful with my diet. Here are my counts this morning. My Hemoglobin is down from 11.6 to 10.6 and my white blood cell count is down form 12.0 to 7.3. However, my platelets are hanging in there from 297 yesterday to 276 this morning. Nicole, RN told me that the platelets are the last to fall and the last to recover during this stem cell process.

I won't be getting my stem cell transplant until around 6 PM this evening as 24 hours has to lapse between the melphalan and the new stem cells.

Hospitalization August 26 to August 27 2011

I had a pretty good night August 26 in to August 27 2011. I continue nauseated 3 to 4 on the 1-10 scale. However, they gave me Ativan and Zofran and I was able to sleep. I took a whole Percocet for creepy legs and back pain between my scapula at midnight or so.

Aide Steph weighed me this morning and I'm still 153 pounds even after the 40 mg Lasix IV last night. I was 147 pounds on admission, but they didn't have it recorded in their computer.

Napped all day off and on August 11 2011

I was pretty worthless again today - napping off and on all day, August 11 2011. The oral morphine and Ativan that I took yesterday for the bone marrow biopsy procedure pretty much snowed me all day today.

Lost another day August 8 2011

When I was 28 years old, I had a bilateral hernia operation. They gave me Ativan after the procedure which they said made me "agitated" and they suggested that I never take Ativan again.

Ativan is one of the main drugs used to help control nausea during stem cell transplant. So, Dr. Moore had me do an Ativan 0.5 mg test. I took the tiny Ativan pill yesterday early morning to see what it would do to me. No AGITATION, just a hazy sleep! That one pill was with me ALL DAY yesterday. I was worthless - drifting from one nap to the next! So, if I need Ativan, I'll just be worthless.