August 30 2011 Report

After my brief walk outside this morning, I had a nap - in fact, I napped off and on all day. I continue to be dizzy when up and I'm controlling nausea with food. Sat outside around 2 PM and started sneezing. Came in and continued to sneeze and have a runny nose for 2 hours - I thought I was getting cold, but it stopped as suddenly as it started. No fever.

Great to be outside again August 30 2011

Woke this morning still a tad dizzy with standing, but I think it is better. Managed to walk with Jani down the block and back. I'm still nauseated, but if I have something in my stomach at all times, it is better - I'll gain more weight - oh well, better than taking drugs or feeling sick.

 Kemmer and me August 30 2011

Summary Report August 30 2011

I was admitted to University of Colorado Hospital for 4 days (8/23-27/2011) receiving the VDT-PACE Regimen of Velcade IV, Dex IV, Thalidomide Oral, Cisplastin IV, Adriamycin IV, Cytoxan IV, and Etoposide IV.

I went yesterday for a blood test and my blood is fine – being stimulated by daily Neupogen injections (total of 780 mg in 2 injections). I’m also giving myself a daily Fragmin (anti-clotting) injection. I’m taking many oral medications too including Claritin (decreases Neupogen bone pain), Ciprofloxacin (antibiotic), Acyclovir (anti-viral), Fluconazole (anti-fungal), Omeprazole (GI distress).

I will have my 3^rd (whose counting?) bone marrow biopsy on 9/1/2011. They are going to try harder to get the results including the cytogenetics back more rapidly, so they will know if my scheduled stem cell harvest will be warranted beginning on 9/6/2011.

If so, I’ll harvest until I give them 10 million cells. (My 1^st harvest yielded about 8 million cells over 3 days which contain 0.8 to 1.2 percent plasma cells – they have saved those cells, but we are hoping for plasma free cells in the 2^nd harvest period).

I will need IV Velcade/Dex on 9/9/2011and will take oral Dex 9/10 and 9/11.

Then, I’m scheduled to be admitted to University of Colorado Hospital on 9/12/2011 for pre-transplant Melphalan IV and Velcade IV with stem cell transplant on 9/13/2011. The medicine on 9/12/2011 wipes out my bone marrow and any cancer that might be hiding and then they give you the stem cells that I harvested the second time.

I’ll be in the hospital at least 2-3 weeks and maybe longer after the stem cell transplant while my bone marrow recovers. After I’m discharged from the hospital, I will have to stay in hotel near the hospital for another 2 weeks, returning to the hospital for frequent tests.

Return to UCH for Blood Test - Monday, August 29 2011

I woke feeling dizzy and like I might faint every time I stood up. I was able to eat breakfast and drink, so I don't think it was fluid and electrolyte issue. I'm either having a reaction to the VDT-PACE chemotherapy or one of the many medications I'm taking...but, it is not fun.

Nancy White drove me to my blood draw appointment at the University of Colorado Hospital. We used Valet Parking and they got a wheelchair for me so we could make it up the the BIC area for my blood draw. My vital signs were fine, although my systolic blood pressure was only 104 or something like that. Dana Godec, RN came down to talk to me and said she discuss my dizziness with the Transplant Nurse Practitioners and the Transplant Pharmacist. Later, word came down that they thought it was due to the chemotherapy and just to be careful with ambulating.

My Trifusion Hickman Catheter would not give any blood out any of the 3 ports. So, Nurse Sarah had to put Cathflo in each of the 3 ports and wait one hour for it to work. In the meantime, Sarah drew my blood out of arm for the tests.

My blood came back fine. I'm still anemic, but I always have been since diagnosis. My platelets are a tad low but I'm taking Fragmin anti-clotting injections daily, and my white blood cell count is high because I'm taking Neupogen bone marrow stimulating injections daily.

Nurse Sarah flushed my TriFusion Hickman Catheter and it worked fine after the CathFlo (alteplase).

Nancy White drove me home - I think we left the hospital around 2 PM. Thank you Nancy!

Kemmer and me August 28 2011

Kemmer was delighted to see me last night and I her. This morning, she was just watching me sleep when I woke up. She is so calm and sweet!

Discharged 11:40 PM August 27 2011

My chemo finally ran its course just before midnight and Nurse Kelly disconnected me. The last hour while it ran wasn't hard on me at all - I slept, but Jani was probably counting the minutes sitting in the recliner next to me. All of the discharge paperwork was done and the discharge went quickly - thank you Kelly~ Goodbye Room 1132.

A transport team guy came with a wheelchair and got me to Bart outside - it was wonderful to feel the warm night air and be outside! I climbed in the back of Bart and slept all the way home to Greeley for the just over an hour trip.

Jani came to get me for discharge August 27 2011

Jani came around 9 PM to get me for discharge from the University of Colorado Hosptial, but my chemo was still running. I'm still nauseated, but okay.

Discharge from the University of Colorado Hospital August 27 2011

I will be discharged tonight from the University of Colorado Hosptial after my chemotherapy has run its course - estimated to be 10 to 10:15 PM. Jani is coming for me and we won't get home until midnight or so - but, I want to be back in my own bed in Greeley, Colorado.

Nausea Day 4 of VDT-PACE August 27 2011

I've been pretty nauseated all day today. Haven't really wanted to eat or drink, but have made myself do both. I didn't do the treadmill today, but I did walk in the hallway twice -  up and down, up and down.
I asked for a Zofran anti-nausea pill this afternoon (I had one at 9 AM) and found that the order was for every 12 hours, so I asked Nurse Jamie to try to get it sooner. She was able to reschedule it and after I got another Zofran at around 4 PM, I was feeling a lot less nauseated. I ate a 1/2 of baked potato for dinner. This nausea is probably going to be an ongoing thing even after they stop the chemotherapty tonight at 10 or 10:15 PM.

The nurse printed out a copy of neutropenic (when your white blood cell count is low) diet rules and I read through all of the pages - more later on that.

Trifusion Hickman Catheter Dressing Change August 27 2011

My skin felt irritated by the usual Trifusion Hickman Catheter Dressing they used on me August 5 2011. These dressings are intended to stay put for a week. However, since, I was anxious about it, Advanced Care Partner, Kirby, was allowed to change the dressing this morning and replace it with a Tegaderm dressing which I am more comfortable with because of my severe tape allergy. I was just constantly aware of the dressing and it itched some especially at the top.

The new tegaderm dressing in place now. I'm happy.

Nurse Practitioner Karley and Dr. Pollyea Visits August 27 2001

Both Dr. Dan Pollyea and Nurse Practitioner Karley came to see me early this morning on a Saturday which surprised me. Both offered that I might want to stay through the night  tonight and not discharge when the VDT-PACE chemo finishes running at 9 PM or so. So, they are switching me from IV anti-nausea drugs to oral pills today to see if that controls the nausea adequately enough. If not, I might have to stay another night to adjust to the pills. However, I'm feeling pretty set on getting out of Dodge tonight!

Nurse Practitioner Karley went over my long list of discharge medications and told me that I need to come to the BIC (blood lab) on Monday to have my blood checked again in case I might need a blood transfusion or platelet transfusion from the effects of the VDT-PACE I've gotten over the last 4 days.

I tried to get up and take a shower, but found myself dizzy for the first time ever - glad to lie back down. I drank a whole bottle of water and ate some oatmeal with a banana and I think I'm feeling better now. Aide, Kirby found a shower chair and put it in the shower for me when I do feel like getting back up for the shower.

Advanced Care Partner (an aide who has expanded duties because he/she is enrolled in nursing school and has completed their medical-surgical rotation) Kirby is going to take the Trifusion Hickman Catheter dressing that I think I'm allergic to off this morning and replace it with just a Tegaderm. I don't think I have  huge allergic reaction, but I'm constantly aware of an irritation and the Hickman, so, I think it would just be better to replace it with the Tegaderm that I know doesn't bother me.

Advanced Care Partner Kirby August 27 2011

Morning Labs August 27 2011

They drew my blood and my morning labs are doing pretty well. My white blood cell count (WBC) is dropping to 2.9 as expected from the chemo, but my platelets actually went up a tad from yesterday. My hemoglobin dropped a little more from yesterday too from 8.7 to 8.4, so I remain anemic (have been since diagnosis).

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.

Retaining fluid with the VDT-PACE Chemo August 26 2011

I weighed 147 pounds on admision and almost instantly jumped up to 155 pounds withing the first 12 hours of the VDT-PACE Chemo Regieme. They have given me Lasix twice. The first time was 20 mg and my weight came down to 153.7 pounds. Then, around 5 PM today, August 26 2011 they gave me 40 mg of Lasix . I really put out a lot of urine until about 10 PM and then it slowed down. My feet and ankles are not swollen with the extra fluid. I seem to be retaining it in my face and thorax. My eyes are just slits early in the morning.

Pharmacy Mission for Discharge Prescriptions tomorrow completed August 26 2011

Faye Hummel had to go down to the University of Colorado Hospital Atrium Pharmacy twice with my long list of discharge medications, but she "gotter done". I wanted to get this all lined up before tomorrow which is Saturday and everyone knows things are harder on the weekend.

The Pharmacy did not initially have all the orders, but after a trip upstairs and the help of Nurse Kelly and Pharmacist Jeff, the orders were sent down to the Pharmacy. Thank you friend!!!! Faye told me that she liked going down to the Pharmacy, because while she waited, she went out in the sunshine and warmed up - EVERYONE thinks it is freezing in my hospital room. Here is Faye while she visits :)

Medications  I'll be taking on discharge:

• Neuopogen injections daily to stimulate my bone marrow to mobilize stem cells for 2nd round of stem cell harvest beginning September 6 2011
• Claritin antihistamine which may help to reduce bone pain associated with Neupogen use
• Fragmin injections daily to prevent deep vein thrombosis
• Criprofloxacin antibiotic to prevent infection
• Acyclovir to to prevent shingles
• Fluconazole to prevent fungal injection
• Omeprazole (Prilosec) to treat acid ingestion
• Zofran to treat nausea
• Zantac for acid ingestion
• Ativan for nausea
• Celebrex to treat bone inflammation
• Thalidamide just through Days 2-6 (Day 2 was August 24, Day 3 was August 25, Day 4 August 26, Day 5 August 27, and Day 6 will be August 28)
• Stool softeners and constipation aids as necessary
• L-Glutamine Protein Powder to prevent neuropathy
• Vit. B12, B6 to prevent neuropathy
• Calcium with Vit D3 for osteopenia
• Levothyroxin for low thyroid
• Baclofen for migraine prevention
• Lovastatin for high cholesterol
• Percocet for pain as needed only

Dr. Ben Brewer, Transplant Team Psychologist Visits August 26 2011

While Faye Hummel ran down to the pharmacy to get my discharge medications, Dr. Ben Brewer, Transplant Team Psychologist came to visit me August 26 2011. I like Ben and feel thoroughly comfortable in sharing my feelings with him and I DID~

Dr. Ben Brewer and jm at University of Colorado Hospital Bone Marrow Transplant Unit
August 26 2011.

Ben also reminded me of a very easy deep, slow, diaphrapmatic breathing technique for relaxation and I was surprised at how much it helped. I visualized the bald eagles flying above the Big Lost River fishing that I often see on my walks at home in Mackay, Idaho. 

Oh, how I miss my home in Mackay, Idaho! This photo is one I took on my walk May 28 2011.

I have a Mackay Idaho 83251 blog if anyone is interested where I cover current events, historical Blast from the Past, and obituaries. The blog is located at http://mackayidaho1.blogspot.com/

Faye Hummel arrives for a visit and a delivery August 26 2011

Faye Hummel met up with Jani this morning to bring me clean clothes from Greeley. It was wonderful to see her and especially nice to get the clean foundations (undies).

jm and Faye Hummel at University of Colorado Hospital 11th Floor Bone Marrow Floor Room 1132

Nurse Practitioners Visit August 26 2011

Nurse Practitioners Karley and Shannon came to visit this afternoon. Karley will make sure I get some Lasix tomorrow morning because I am still retaining fluid. She asked if I could like to stay Saturday night and go home Sunday morning and I told her I would prefer to go home Saturday night when the chemo cocktail VDT-PACE has run its four day course. She assured me that she would have everything ready for my discharge.

Treadmill and Computer August 26 2011

Although I am nauseated (3 on a 1-10 scale I made up myself), I decided that treadmilling would make me feel better. So, I went with IV Pole with 4 pumps on it and all the chemo bags. Remember, the chemo is light sensitive, so they have sun shades over them.

jm getting ready to don the blue gloves for the treadmill session. they have a tv over the treadmill that I cannot see, but I listen to it. I managed 1.25 miles this morning and walked the first mile at 3.0 miles/hour. I did fine, except for that persistent pain across my back when I walk. If I slow down, the pain goes down too...but, I love walkin'.

After I did the treadmill and wiped all the surfaces I had touched with the blue gloves on, I used the computer in the other corner to print out a list of the television options here at the University of Colorado Hospital that I made - so, I'm not sure I really named the channels correctly. Very few of my usual channels are available - oops, I'm almost whining~

. 

Physician and Nurse visits August 26 2011

Dr. Dan Pollyea came in for a visit this morning. He always asks such good questions and waits for my answers. He is pleased with how the nurses are controlling my nausea. He told me Dr. Han Myint and Dana Godec, RN would be up to see me this morning too.

A little bit later, Dr. Myint and Dana Godec, RN arrived.

Transplant Coordinator, Dana Godec, RN and Transplant Unit Director, Han Myint, MD        August 26 2011

I am scheduled for my next bone marrow on Thursday, September 1 2011 and Dr. Myint is sure the results will be back prior to my next scheduled stem cell harvest date of September 6 2011. If the bone marrow results are such that a second round of VDT-PACE would be necessary, Dr. Myint would like to do that prior to the stem cell harvest. I'm in full agreement even though this will extend my time here and away from home in Mackay, Idaho.

However, Dr. Myint thinks my bone marrow on September 1 2011 will be much improved because I am getting some many "NEW TO ME" chemotherapy agents with the VDT-PACE. The only chemo agents of those that I have received are Velcade and Decadron - all the rest are new. Dr. Myint likened that to hitting the cancer from many angles.

Dr. Myint reminded me that stem cell transplant will not cure me and that I will need chemotherapy maintenance after the transplant or tandem transplant if necessary. The tandem transplant would be done 60 days after the first transplant if my bone marrow was not showing the best response after the first transplant.

I reminded him that I live in Idaho and would prefer to get my maintenance chemotherapy after the transplant(s) in Idaho - preferably in Idaho Falls or Blackfoot and not Boise. He said he knows several Idaho oncologists and would work with me when the time arrives. Dr. Myint would remain my primary oncologist and would direct my care via the Idaho oncologists. I will still need to return to Colorado for followup visits with Dr. Myint. 

CBC overtime from August 10 to August 26 2011

My CBC over time from August 10 2011 to August 26 2011 is starting to fall some from the DVT-PACE Regimen as expected.

Night 3 University of Colorado Hospital August 25 to 26 2011

I had a good night, still have nausea, but pretty well controlled with Zofran IV, Zantac by mouth, and a small dose of Ativan. I didn't get my creepy legs syndrome until 3:30 AM and 1/2 of Percocet took care of that.

New Calendar leading to 3rd Bone Marrow Biopsy and 2nd Stem Cell Collecion

I will have a my 3rd bone marrow biopsy on September 1 2011, followed by my second stem cell harvest beginning September 6 2011 for potential stem cell transplant on September 12 2011. As you can see from the calendar, I'll have to take a number of medications throughout these pre-procedures including antibiotics, antivirals, antifungal, anticlotting, anti-GI issues, and bone marrow stimulating medication.

Change of Shift Day 3 Days to Evening August 25 2011

Here at the University of Colorado Hospital 11th Floor BMT Unit, I have the nicest nurses and whats more important is that they are very skilled and work seamlessly together. On top of that they are all nice!

Day Nurse Kelly changing shifts with oncoming Night Nurse Laurie August 25 2011

Night Aide Steph with her vital sign machines August 25 2011

Trifusion Hickman Catheter Dressing Change August 25 2011

Nurse Kelly changed the dressing over my Trifusion Hickman Catheter Dressing this afternoon. She had a different adhesive cloth cover vs the Tegaderm plastic cover I used to have. We are crossing our fingers and TOES that I do not react to the adhesive on the new cover.

Jani came to vist and the treadmill August 25 2011

Jani came to visit and despite my persistent nausea, I did the treadmill for 1 mile much slower today at 28 minutes...but, I did it.

Came back and showered and still felt nauseated. However, the nurses are giving me anti-nausea medications which hold it down and I have not been sick.

Day 3 of DVT-PACE - Nausea August 25 2011

When the day shift arrived for my 3rd day at the University of Colorado for the DVT-PACE regimen, I got IV Zofran for my nausea. I took another dose of Milk of Magnesia and then things really got going south - too much, but so much better than being bloated and uncomfortable.

Dr. Daniel Pollyea and Nurse Practitioner Karley  came in to see me and discovered a slight heart murmur which they felt was due to all the fluid I was retaining. They ordered a low dose of Lasix IV and it worked well. My little eyes were slits and then I could open them up better. I didn't seem to have any swelling in my feet or ankles, just my face and gut~

I didn't feel like eating all day, but managed to eat some oatmeal for a late breakfast, alittle macaroni and cheese for lunch, and a some chicken noodle (they forgot the noodles, but there was plenty of chicken) soup and a cheese quesadilla for dinner). My guts finally slow down and stopped going south.

I had an EKG and it was normal.

Nauseated a tad this morning August 25 2011

I woke this morning with a bloated gut and nothing going south. My stomach has sort of a burning metallic feeling and I'm nauseated - don't really feel like eating or drinking which is totally not ME~ Nurse Laurie gave me more Milk of Magnesia (I took a dose last night too) and I finally had some movement south about an hour later.

My weight has increased from 147 on admission just 2 days ago to 155 this morning. They tell me these chemo drugs cause fluid retention.

However, my stomach remains nauseated. Nurse Laurie who is the kindest person, thinks the chemo cocktail is catching up with my gut. She offered me anti-nausea medication either Compazine or Ativan, but I'm holding off until I can eat something to see if that will help without medications which will just make me tired.

About an hour later, I relented and took 0.5 mg of Ativan - slept for about an hour and then ate my oatmeal. My stomach is still upset. They are going to get an order for Zofran (anti-nausea medication).

Night 2 at the Universtiy of Colorado Hospital August 24-24 2011

After the change of shift at 7 PM last night going into  my 2nd night at the University of Colorado Hosptial, I just crashed in to a deep sleep for at least 4 hours. Jani tried to call text and call me and I didn't answer, so she ended up calling Nurse Laurie who told her I was just ASLEEP, VERY ASLEEP and wasn't even being disturbed by the beeping of my IV pump. My aide tonight was Steph and after she did my middle of the night vitals, I watched television, but I had very creepy legs which is not unusal for me. So, Nurse Laurie gave me a 1/2 of a Percocet  - I can have a whole one - but, I don't like to take that much as I'm very sensitive to medications. Back to sleep I went until 5 AM. It was a good night of sleeping.

Room Service for the 11th Floor at University of Colorado Hospital

Meals on the 11th Floor of the University of Colorado Hospital are provided via Room Service. This requires the patient to call the dietary department to order any food they would like between 6:30 AM and 8 PM. After the call, the food arrives in your room 45 minutes to 1 hour later. The hardest part for me is remembering to make the call before I get hungry - you know me, always impatient when I'm hungry~ So far, everything I've gotten was good, but I'm on 40 mg of IV steroids daily and steroids make everything taste wonderful. Here are the menu pages:

University of Colorado Hospital 11th Floor Oncology Pharmacist Came to visit August 24 2011

University of Colorado Hospital 11th Floor Oncology Pharmacist, Jeff, came to visit August 24 2011.

He brought an elaborate calendar with all the medications I would be taking related to the 2nd stem cell harvest (I take other medications too like Celebrex, Lovastatin, Levothyroxin, and others that are not included in this calendar)..

Jeff said my hair may take up to 3 weeks to fall out from the Doxorubicin (Adriamycin) primarily. I'm not at all concerned with the hair loss.

The good news is that my Thalidomide pills are in the building!! Just one day late. My Transplant Coordinator, Dana Godec, RN took care of this. She probably devoted much of the morning to this task - making phone calls to the Curaspript Pharmacy that was supposed to deliver the pills and DID NOT and then getting approval from my insurance to get them at a locate pharmacy that she actually drove to herself to pick up the pills. Dana makes things happen and has excellent follow through. I'll get my first pill at bed time tonight.

Visit from my Inpatient Physician, Daniel Pollyea MD August 24 2011

I met my inpatient physician  for this VDT-PACE regimen, Dr. Daniel Pollyea this morning. 

He was very nice, asked me all about my history and was a good listener. I liked him.

Walking 1.35 miles at the University of Colorado Hospital - August 24 2011

They have a very nice treadmill in a HOT LITTLE room here on the 11th Floor of the University of Colorado Bone Marrow Transplant unit. I put my clean tennis shoes on (Jani washed them and I put brand new insoles in them) and did 1.35 miles.  I think I walked faster than when I walk outside with Jani and the dogs...either that or the heat in the room made my heart go a thumpin'. Yes, that is my IV pole with all those pumps and concoctions on it AND I've only forgotten to take it with me all the time until jerks me back ~~~~

Change of shifts University of Colorado Hospital August 24 2011 7 AM

The nurses gather in the room for change of shift report here at the University of Colorado Hospital - I like that. From left to right, Nurse Laurie (off going night nurse), Nurse Angela and Nurse Johanna (day nurses for August 24). Aren't they cute?

1st Night Report Inpatient University of Colorado Hospital 11th Floor BMT Unit August 23-24 2011

1st Night Report Inpatient University of Colorado Hospital 11th Floor BMT Unit August 23-24 2011. I had a pretty good night, although I did not sleep well. Nurse Laurie gave me 1/2 of Percocet for creepy legs and left-sided neck pain - helped a lot and did not snow me. Nurse Laurie had trouble drawing blood through the red port on my Trifusion Hickman Catheter, so she had to order some medicine to put in there for 40 minutes and then it worked - at least we hope it does for the next blood draw.

Nurse Laurie, Nights August 23-24 2011 and I never did get a picture of Cheri (sorry).

Aide Cheri was very helpful through the night with any of my requests. I walked up and down the short hallway twice during the night.

I had a chest x-ray last night to check the placement of the Trifusion Hickman Catheter because there is a curling of the tubing in my neck above the actual catheter exit point. The x-ray came back normal - whew~

I haven't really experienced nausea per se, but each time I feel like I might - I feed it!~ I ate a peanut butter sandwich through out the night, some wheat thins, and a vanilla yogurt. I've already gained 3 pounds and I hadn't even been here 12 hours when they weighed me.

24 Hour Urine August 23 to 24 2011

I'm on a 24 Hour Urine, so I have to call the nurses each time I void to empty the urine out of a hat in the toilet to a collection container that has to be kept on ice.

And while I'm here in the large bathroom, I'll show you the shower and sink.

 The hospital provides this Medline Remedy Foaming Body Cleanser for showering.

 The hospital also provides this salt/baking soda that I mix with water and gargle 4 times at day. Helps in reducing mouth sores and ulcers from chemotherapy.

Tour of my Room 1132 and the BMT Unit Hall at University of Colorado Hospital August 24 2011

My side of the BMT (Bone Marrow Transplant) Unit at the University of Colorado Hospital only consists of 5 rooms. The hallway is short for walking...later today I'll try the treadmill out which is down in a small day room.

My room 1132 is the first room on the left (all the rooms are on the left) after you come through the doors from the Nurses Station. Photo above is looking down the hallway to the other 4 rooms. The photo below is my right (I've turned around) looking at the doors to the Nurses Station. No, I don't need that port-a-potty - it's just there~~

The door to my room 1132.

jm in command center Room 1132 University of Colorado Hospital (UCH)

The room has white board where the nurses and aides write their names. I'm still in Day 1 because I wasn't admitted until 1:30 PM August 23 2011