Day 7 - Physician Rounds September 20 2011

Allisa (sp) a social worker came by instead of Ben Brewer, PsyD to talk to Jani and I about any emotional issues we might have. We had had good visit and I don't think we had any big issues - just going with the flow of the stem cell transplant. In many ways, I am well suited for the isolation the shingles requires and I'm not suffering as much cabin fever as one would expect.

Dr. Myint and Nurse Practitioner Trish stopped by for visit. Dr. Myint says I am feeling just as it should be until my stem cells make their home in my bone marrow. He told Jani and I cute story about the stem cells. When I received my own cancer-free stem cells late on September 13th they were injected with a very lousy GPS system. The stem cells most probably traveled directly to my lungs, looked around and said, this is NOT our home and left. As they traveled by my liver, they thought about making home there and quickly realized there was too much going on in the liver for a new home. They swam quickly by the spleen realizing they could be swept up and killed there. Finally, they arrived in my bone marrow within 48 hours of their injection and said,"Yes, this is our home, but where is our furniture?"   Since arrival in the bone marrow, the stem cells have been ordering furniture and tv's to make a home. This process can take up to 11 days - so, until then I'll feel nauseated and maybe tired.

Dr. Myint suggested that I just take the Ativan and Percocet as needed and when the engraftment occurs, it is like a switch is turned on/off and I'll just feel better and the shingles will improve.

Later, Dana Godec, RN, my Transplant Coordinator came by for a short visit. It was good to see her. She is back at work after being gone for awhile.

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.

Melphalan Dosage Day -1 - September 12 2011

One really nice thing about having a Trifusion Hickman Catheter is that they can instantly attach IV lines to you without ANY NEEDLE POKING. The nurse drew my blood and sent it off for multiple testings. They also started me on 24-hour urine collection.
Nurse Nicole got me hooked up the fluids.

In preparation for the melphalan dosage to kill my bone marrow function, the nurses gave me
Ativan, Magnesium 2 Grams (because my blood values were low on admission), Zofran 8 MG IV and then my melphalan around 6 PM. I had already taken 20 mg oral dexathemasone this morning, so did not need an additional dose with the Zofran. 

At 5:30 PM, I started sucking, chewing, and swallowing ice chips in an attempt to cool my mouth and GI tract. I was cold and had to put my cap and sweatshirt on. I should of had my snow mittens or gloves, but Faye substituted one of my clean socks to hold the cold glass full of ice.  I continued with ice chips and popsicles when they hung the melphalan which ran for 15 minutes.

Nurse Hannah hangs the melphalan at 6 PM, September 12 2011

Melphalan is light sensitive and needs to have a sun shade over it.

I continued to eat ice and had a couple of popsicles while the melphalan ran and then I continued with more ice for 30 minutes after the melphalan was completed.

My Transplant Coordinator Nurse, Dana Godec, RN is out sick. I MISS HER. I'm wishing her a quick recovery - all of last week, I thought Dana was coming down with something - hope it is not serious. Another nurse Transplant Coordinator is covering for her, Tina Russell, RN who came to meet me and have me sign a stem cell transplant consent form. In addition, two Oncology Nurse Practitioners, Diana and Carrie (NPs) came to seem me. I shared with them the list of medications and allergies that I typed up so they could use the information as the write my inpatient orders.

They were SLOW in getting me in to the new computer system and I was unable to order lunch via the hospital call-in-your-order system, because the system did not know I was here yet. So, Faye Hummel ran across the street to be Big City Burrito and got us burritos for lunch - yummy. She brought back their menu and there are many good choices. I am limited to a neutropenic diet which eliminates things like lettuce, tomatoes, fruits and veggies, and anything poorly cooked.

Jani arrived around 2 PM and stayed until well after dark. Faye Hummel brought me this morning and ended up staying until well after dinner time - a very long friendship shift - thanks Faye!!!!!!

At bedtime, they gave me repeat dose of Ativan for nausea and my usual night time pills.

My stomach is SOUR and I've been drinking Kellogg's Special K Protein Shake French Vanilla Flavor which helps coat my stomach - also eating low-salt saltines.

Slept until just about 2 AM. I have to wear a mask if I leave the room, so I put one on and walked the hallway up and back for 11 minutes. Helps my creepy legs syndrome. My IV pole has very poor rolling wheels and I'm going to contact maintainence tomorrow on either a repair job or a replacement pole!



Second Round stem Cell Harvest - September 6 2011

University of Colorado Hospital Apheresis Center September 6 2011

 jm and Jessica Jones from the Apheresis Center September 6 2011

 jm and Transplant Coordinator Dana Godec, RN September 6 2011

My wonderful sister, Jani September 6 2011

300 cc of my blood which hopefully contains LOTS of stem cells September 6 2011. Won't know the count until tomorrow.

Just when things were looking up - SHINGLES September 3 2011

I just started to feel more like "normal" after my 4 day hospitalization for VDT-PACE (6 different chemotherapy agents and steroids) 8/23-27. I broke out with the shingles tonight despite being on prophlactic anti-virals (Acyclovir). I called Transplant Coordinator, Dana Godec, RN and she said she'd talk to the doctor and get some more medication ordered for me. Thank you Dana - I can ALWAYS count on her! Took some Percocet because shingles are a painful thing!

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. 

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.

Stem Cell Harvest Day 2 - August 17 2011

Up at o'dark thirty again and I drove myself again this morning from Greeley, Colorado to the University of Colorado Hospital at the former Fitzsimmon's Army Post location in Aurora, Colorado for my 7:30 AM appointment in the Apheresis Department (2nd floor of the Anschutz Cancer Pavilion).

Jani packed my rolling personal assistant again today. The bottom cooler has cold drinks and yogurt. The middle cooler has bread and snacks. And my laptop computer and with cooling fan tray grace the top. Works very well and I have everything I need throughout the day as I'm tethered to the stem cell machine.

At the Apheresis Department, I was greeted with smiles by Jessica and Martin. Jessica got me started on the apheresis machine. She drew blood first, but we didn't have to wait for the results like yesterday to get started - so, by 7:30 AM, I was hooked up and collecting stem cells. However, the blood test results came right back. My Stem Cell CD34 value was down to 41 from yesterday's 56.5.

My white blood cell count was up to 35.9 from yesterday's 28.8

 My blood type is A Positive.

Unfortunately, the prediction of between 4 and 5 million stem cells during yesterday's Day 1 Stem Cell Harvest turned out to be only 3.01 million stem cells. So, I have a ways to go to get to 10 million~

jm at UCH Apheresis Department Day 2 of Stem Cell Collection August 17 2011

I had a slight reaction after I was hooked up to the machine this morning. My lips tingling and my eyeballs felt jittery. I told Martin and he immediately gave me a bolus of intravenous calcium and very soon after, I felt fine.

Dana Godec, RN spent a long time with me going over the Stem Cell Transplant inpatient guidelines. I felt like I was in school again~

I was surprised with a visit from my cousin, Diane Dynia Miller, today while I was donating my stem cells. She is the oldest daughter of my father's youngest sister (both still living). We had a nice visit and she made me laugh which is imperative in this adventure. I missed getting Diane's picture because Jessica was giving me 2 more Neupogen injections (780 mg total) in my left arm.

By 12:20 PM, my stem cell collection was over for the day. Jessica looks pleased with the collection - won't know the number of cells until tomorrow morning.

Cassie arrived from ClinImmune to take possession of my stem cells and transport them to the lab in the cooler.  Cassie told me that my stem cells from yesterday are now safely frozen at their facility. Cassie is so nice. Jessica and Cassie have to read a lot of numbers and verify everything before Cassie leaves with the stem cells.

Cassie packed my stem cells in a blanket with a thermometer to make sure the temperature is maintained on their way to the lab.

I'm returning for Day 3 of Harvest tomorrow morning.

Neupogen Begins August 12 2011

Jani wheeled me down to the University of Colorado Hospital BIC Center where we waited a few minutes for my Nurse Transplant Coordinator, Dana Godec, RN.

 Jani sat in an extra wheelchair while we waited.

Dana Godec, RN gave me my first 2 Neuopogen shots subcutaneously (one in my arm and one in my abdomen) for a total of 780 mg. The Neuopogen stimulates my bone marrow to send my stem cells to my blood stream for the stem cell harvest to begin, Tuesday, August 16 2011.

I think I was expecting more pain - but, afterall, I did have conscious sedation meds still on board from the Trifusion Catheter placement. I'll be giving my own Neuopogen shots at home August 13-15 2011.

Per usual, Dana Godec, RN is wonderful and sure makes navigation through the system at UCH easier for us. I'm always impressed with her knowledge base.

Second Bone Marrow Biopsy in the record books August 10 2011

Jani took me to the University of Colorado Hospital (UCH) this morning. We went to the Cancer Waiting Room and had Dana Godec, RN, Transplant Coordinator paged. Dana came right over and met with us. We took a tour of the 11th Floor transplant unit. You have to make sure one set of doors inside these doors is closed before going through these doors.

Then, we went to the BIC Lab area and I had labs drawn from my Bard Power Port by Montana native, Cara, RN. I also needed to get a urinalysis.

After the blood draw, we went to get the bone marrow biopsy. Mine was done by Glen Peterson, Nurse Practitioner today with the assistance of Hank Hancock, Medical Assistant.

They had me take morphine and Ativan by mouth prior to the procedure. They wanted me to take 1 mg of Ativan, but I only took 1/2 (0.5 mg).

I was positioned on my stomach for the entire bone marrow procedure this time. Numbed first with lidocaine. Hank did distracting upper back rub as the bone marrow aspiration was done. Unfortunately, the first attempt did not yield the spicules they needed and a second bore had to be done to get adequate spicules (small pieces of bone). I had almost no pain during the procedure and I was calm with the Ativan/Morphine on board. Here is the bone core they got today.

Here I am after the procedure looking drugged~because I was drugged~

After the bone marrow biopsy, Hank, did an EKG on me. Jani joined me in the room along with Dana Godec, RN Transplant Coordinator. We went down to the Pharmacy and picked up 3 boxes of heparin flush solution for the Trifusion Catheter that I will have put in on Friday morning. After that, we went to X-Ray where I was surprised to see Diane Peters sitting there with a friend. That's the second time I've just bumped in to her - it was wonderful to see her. Dana Godec had spent almost all day with us and was very attentive to all of our questions - she's the BEST~ I had quick chest x-ray and off Jani and I went to the cafeteria for a very late lunch. I had a hamburger and Jani had grilled cheese. Finally, we waited outside for the Valet Parking to retrieve Bart for us.

I climbed in back and had a nice nadir on the way home to Greeley, Colorado (about 1 hour 15 minute trip).



My Adventure with Multiple Myeloma is about to take some new turns August 2 2011

I had a call from Dana Godec, RN, Transplant Coordinator at the University of Colorado Hospital today. They want to begin harvesting my stem cells on August 16 2011. In preparation for the stem cell harvest, I will have to have my 2nd bone marrow biopsy, repeat pulmonary function tests, repeat echocardiogram, repeat  EKG, repeat chest x-ray, blood labs, the placement of a TriFusion Catheter in my left chest (interventional radiology does the placement), paperwork and consent forms session, and Neupogen injections (780 mcg subcutaneously) to stimulate my bone marrow for 4 days prior to harvest. I'm to take Claritin (over-the-counter) each day that I have the Neupogen injections.

So, that's alot to happen in the next 2 weeks and much new to me. I'm concerned with the bone marrow biopsy and Dana Godec assured me that they would medicate me for the procedure this time. Here is the calendar of events:

Bard Hickman Trifusion Catheter for intravenous access. All of those 3 pigtails will be outside my skin and require sterile dressing changes.

Tape Allergy is a concern as I approach the Trifusion Catheter Insertion for Stem Cell Harvest

My severe Tape Allergy is a concern as I approach the Trifusion Catheter Insertion on August 12 2011. I sent Dana Godec, RN, Transplant Coordinator at the University of Colorado photos of my skin reaction to the tape and steri strips used during the placement of my Bard Power Port in my right chest on June 14 2011. In addition, I ran a fever of 101.2 until the tape and steri strips were removed and my temperature returned to normal.

The only type of tape that seems NOT to react on me is Durapore Silk Tape. I bought several rolls online and take it to my chemotherapy sessions each time. I am also Latex Sensitive. Dana wants me to test Tegaderm on my skin prior to the Trifusion Catheter Insertion.

Email from Dana Godec, RN Transplant Coordinator University of Colorado Hospital June 23 2011

Dana Godec, RN, the Transplant Coordinator at the University of Colorado Anschutz Cancer in Aurora, Colorado emailed me while I was getting chemotherapy this morning at Dr. Moore's Front Range Cancer Specialists in Fort Collins.

Judy,

The insurance company has authorized your transplant evaluation so I have called Dr. Moore's office to schedule a PFT (pulmonary function test), an echocardiogram, a chest x-ray and an EKG.  Donna, our scheduler will be calling you to schedule a psychology evaluation by Dr. Brewer here at UCH and a lab appointment on the same day to do an infectious disease workup.  The appointment with Dr. Brewer will be done with both you and your sister.  We will absolutely work around your scheduled trip  (I think that you deserve this!).  Please let me know if you have any questions or concerns.  Once the evaluation is completed, we submit the information to the insurance company and will get a second approval for the transplant.  When we get that approval, we can move forward with collecting your stem cells and subsequent transplant. 

Dana Godec, RN

Transplant Coordinator

Hematologic Malignancies/BMT Program

University of Colorado Hospital

I forwarded the email to Dr. Moore who was working in his Loveland, Colorado office today. While my chemotherapy ran, Nurse Robin worked on getting the printed orders for the chest x-ray and the EKG. I already had the Echocardiogram scheduled for this afternoon and the pulmonary function tests on July 5 2011 at 8 AM.

University of Colorado Hospital Dana Godec, RN returned my email this morning June 20 2011

Dana Godec, RN, the Transplant Coordinator for the Hematologic Malignancies/Bone Marrow Transplant Program at the University of Colorado Hospital emailed me and answered the questions I had about insurance pre-approval for the stem cell transpant. She said the approval process is done in two phases. For right now, they have everything  they need to proceed with the first level of insurance approval. Dana will keep me updated with anything I need to do.

I feel calmer to have a contact at the University of Colorado who is so responsive to my questions.

Dana also indicated that she received my former MRI and CT study reports in PDF Format and would make sure Dr. Han Myint received them.

Scheduling More Tests for Autologous Bone Marrow (Stem Cell) Transplant June 17 2011

My oncologist, Dr. Moore's office called and is attempting to help me schedule a few more tests that I will need to have the pre-authorization from my insurance company for the autologous stem cell transplant at the University of Colorado Anschutz Cancer Center. I need pulmonary function tests, echocardiogram, and a psychological evaluation to complete the battery of pre-tests (I think).

Dr. Moore is very cooperative in all scheduling and is right on top of everything for me, but they do not have written requests for these additional tests.

I tried to email Dr. Han Myint, the Director of the Bone Marrow (stem cell) Transplant Team without success - wrong email on the business card he gave me and it bounced back. So, I emailed one of the Clinical Nurse Coordinator's, Dana Godec, RN to get clarification on the needed the tests. She was out of the office today, but at least her email did not bounce back.

I also sent Dr. Han Myint copies of my previous Brain MRI's, Sinus CT, and Surgery via Dana Godec.

I want to get the tests over and done with this coming week, so I can leave for Mackay, Idaho after my last doses of chemotherapy in Cycle 1 on Thursday, June 23rd. After 2 weeks of chemotherapy, I get 1 week off from medication. Jani and I would actually leave on Friday, June 24 and then I'd get to be home in Mackay, Idaho until July 3rd when we would return to Colorado.

1st Appointment with Bone Marrow Transplant Doctor at the University of Colorado Cancer Center June 15 2011

Jani drove me to the University of Colorado Hospital Cancer Center in Aurora, Colorado this morning. The drive takes just over an hour. The new University of Colorado Hospital is located on the old Fitzsimmon's Army Post. This is the old Fitzsimmon's Hospital building.

We turned left here and went to the new University of Colorado Hospital. Found our way to the laboratory for cancer patients and gave MORE BLOOD.

I continued to feel rotten, weak, and febrile. After this, we went to another cancer clinic area and I had to fill out MANY pages of history information. The medical assistant guy did my vital signs and my temperature was now 101.2 degrees and my entire head was hurting.But, the Polish Sisters still managed a smile of sorts.

Jani and I had to wait FOREVER to see the Bone Marrow Transplant Director, Dr. Han Myint. The room was COLD and I was miserable!

There was a sign on the desk in the exam room that said to "Press the Green Button on the wall if no one came for 30 minutes." Jani was pressing the Green Button - a nurse practitioner came and gave us a notebook about the Bone Transplant Center. Then, we waited some more. Finally, Dr. Han Myint came in and introduced himself to us. Dr. Myint spent more than an hour with us giving us a PowerPoint Presentation on his iPad about multiple myeloma and autologous bone transplant (where you donate your own stem cells for the bone marrow transplant).

Dr. Myint explained "CRAB" for diagnosis and selection for stem cell transplant:
"C" is for chromosomal changes (I have this); "R" is for Renal Damage (I do not have this); "A" is for Anemia (I have this); and "B" is for bone lytic changes and/or osteoporosis (I do not have this - I have osteopenia but that does not qualify).

I felt so MISERABLE and my head was pulsing - that I had a hard time following Dr. Myint's presentation. However, Jani recorded it with her iPhone and I'll have to watch again. Dr. Myint examined me and he does NOT think my port is infected, but I may be having an allergic response to it.

Because I have Stage 1 HIGH RISK multiple myeloma (with chromosomal changes - translocation of 4/14 with deletion of 13) I need immediate treatment and bone marrow transplantation after 3 or so cycles of chemotherapy. They could be harvesting my stem cells from my blood for the bone marrow transplant as early as July 25 2011.

And depending on my response to the 1st stem cell transplant, they would do a second stem cell transplant as soon as 60 to 100 days after the 1st one.

The good news to me was that they no longer have to get your stem cells from bone marrow taps. They have a blood machine that they hook you up to and the stem cells are harvested from your blood over 6 or more hours. 

Here is a picture of the machine from the internet.

Dr. Myint called my oncologist, Dr. James Moore, while we were there because he wants Dr. Moore to evaluate my port of allergic response. Dr. Moore will see me tomorrow morning prior to my 2nd chemotherapy appointment.

I climbed in the back of Bart (2006 Honda Pilot) with the memory foam bed and slept most of the way back to Greeley, Colorado. It was 90 degrees outside and I was cold with fever.  Jani is so good to me!



Arrived back home in Greeley, Colorado still feeling febrile, headachy and ROTTEN!