Day 10 to 11 Night View from Room 1125

Day 10 - 4 PM Update September 23 2011

I had a quick nap and was just waking up when I hear a commotion at the door to my room. A lady employee in street clothes was showing my brother, Jeff, and sister-in-law, Carol, how to don the isolation attire and enter the room She had told them NOT to TOUCH me or or my bed and they shuffled in along the back wall with their hands up in the air like they were entering a surgical suite to perform surgery. I was laughing out loud!!!! The poor dears were terrified that they were going to contaminate me or something!

I was really surprised by their visit because they hadn't told anyone they were coming from Cuchara, Colorado (down by Walsenburg in southern Colorado). We had a really good visit and NEVER stopped laughing - laughing is GOOD. They left to go find some place to eat and I had another nap.

Woke to more friends visiting, Diane Peters, Nancy White, and Jane Koeckeritz (all good friends that I used to teach with at the University of Northern Colorado). I told them about Jeff and Carol's entry into the room and we all had another good laugh. Being all nurses, they were much more comfortable with the isolation routine.

Dr. Nancy White, Dr. Diane Peters, and Dr. Jane Koeckeritz September 23 2011

We had a wonderful visit again laughing alot - if laughter is good healing medicine - I got alot of it today!

Jeff and Carol returned from their late lunch and my friends departed. Not long after that, my sister, Jani arrived from Greeley - a mini-Farkle Family Reunion minus Paco, our 90-year old father in Mackay, Idaho and my nephew, Nick Malkiewicz in Austin, Texas. I called Paco on the phone, so he was sort of here. He is doing fine in Mackay by himself - said it was 80 degrees there today!

Jani, jm, Jeff, and Carol Malkiewicz September 23 2011

My siblings really enjoyed Judy Richter's oatmeal scotchie cookies too.

Eating cookies with their best isolation technique. I told them if I die because of their germs, at least we could blame it on the gene pool~~~~

Jeff and Carol left for the long drive back to Cuchara, Colorado. Jani stayed on and helped me with a shower and changed my bedding. She takes my blanket and pillow cases home each day, washes them, and brings me clean replacements.

After my shower, Nurse Dana (female) worked on my Trifusion Hickman Catheter dressing change. I developed blistered areas around the top and bottom of the Tegaderm dressing as it may have been applied too tightly or I had fluid retention or something. We ended up putting on a smaller dressing so the edges can heal. Jani left around 8 PM for Greeley, Colorado. I love my family and friends! Thanks for a special day!

My 4 PM September 23 2011 lab values are unchanged. I'm still without an immune system with a white blood cell count of minus 0.1, anemic with a hemoglobin of 10.5, and low in platelets at 28.

After all my visitors left - I was pooped and slept HARD. Jani snapped this photo of me sleeping before she left for the night. Sometimes that bald head gets cold, so I use a little polartec hat.

Day 10 - Morning Update September 23 2011

Well, I still have NO IMMUNE SYSTEM according to my 4 AM blood values. My white blood cell count is still less than 0.1, hemoglobin 10.4, and platelets at 37.  Just have to wait for all of those new baby stem cells to furnish the bone marrow space first. I am feeling some better - a little less nauseated and I'm actually sipping on some coffee for the first time in many days.

My nausea is improved (not gone) and I felt like eating breakfast this morning (scrambled egg and hot cream of wheat cereal).

Judy Richter and Jan Martin arrived to visit me all decked out in their yellow isolation gowns, blue gloves and yellow masks. Judy brought delicious oatmeal scotchie cookies - quite gourmet for around here. We had a good visit and they were able to meet my Transplant Coordinator, Dana Godec, RN. Jan and Dana had lively discussion about the need for and lack of a Hope House on the University of Colorado Hospital grounds. I don't think Dana realized that she was talking to a "fund raising gal" at first. Missed getting a picture of Jan and Judy, but I can tell you that they were lovely for the CU School of Nursing Alumni Luncheon this afternoon where Dr. Phyllis Drennan will honored.

Day 9 Evening Update September 22 2011

I had a transfusion of platelets this afternoon. Had to take Benadryl again for those platelets and slept most of the day until Faye Hummel arrived to entertain me.

My 4 PM blood values. My hemoglobin is up to 11.0, platelets up to 56, and my white blood cell count remains less than 0.1.

Monica, RN let me take pictures of her shoes for my blog - she works every night with "happy feet".

Day 9 - Platelet Transfusion September 22 2011

I had a platelet transfusion this morning because my platelets were at 19.

Platelets look yellow in the bag. They do not run them through the pump, just by gravity.

This bruise on my right arm came out of nowhere - don't remember bumping it.

My shingles are beginning to dry up and not bother me as much.

Day 9 - Morning Report September 22 2011

I had 2 units of blood transfused in over the night.

Here our my 4 AM morning labs results. The blood transfusion did raise my hemoglobin from 7.9 to 10.8, but my platelets are still low at 19, so I'll need a platelet transfusion today. My white blood cell cound is still less than 0.1 (no immunity system present now).

My breakfast arrived without my having to call for it - so, that was good - scrambled eggs and hot cream of wheat cereal.

The signs on my door as you enter.

Day 8 Afternoon Update September 21 2011

Nancy White came and spend a couple of hours with me this afternoon. I did better at staying awake.

My CBC for 4 PM today September 21 2011. White blood cell count is less than 0.1, platelet count is 23, and hemaglobin is 7.9. Maybe they will give me a blood transfusion tonight.

Day 8 Morning Update September 21 2011

Nurse Sherry drew my 4 AM blood values. I had a pretty good night, except for the continued nausea and gut pain. Helps to eat something whenever they give me pills, so, I munched on Wheat Thins and had a tapicoa pudding. My white blood cell count has dipped to 0.1, platelets at 37, and hemglobin at 8.6 - so, now blood or platelet transfusions today may be in my plan of care. 

Good morning world September 21 2011

Judy Richter came to visit this morning. I slept much of her time her, but it was still wonderful to see her..

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 7 Evening Update September 20 2011

Blood Counts  4 PM September 20 2011 continue to drop. White blood cells at 0.1, platelets at 46 and hemoglobin at 8.5. They will give me platelets if mine drop below 20 and a blood transfusion if my Hemoglobin falls below 8.

The Infectious Disease doctor came to see me again today. She said we can increase the acyclovir dose for the shingles from 10 mg to 15 mg, but she wants to talk to Dr. Myint first. It is amazing to me how such non-descript lesions can cause so much PAIN.

Faye Hummel came at 3 PM and spent all afternoon and most of the evening with me. We didn't talk about much, but it as nice to have her here with me. She brought me an organically grown banana that the nurses let her wash and peel for me - I was not allowed to touch the peeling. It tastes good.

Day 7 - Morning Update September 20 2011

I had a good night - sleeping between vital signs, medications, and blood draws. My shingles under my left breast on my thorax (not on my breast itself) are still PAINFUL, but I had some Percocet and used an ice bag which helped. I didn't wear a shirt all night so the shingles could dry out a bit. They sure don't look as bad as they HURT. The hurt continues around my side to my back, but I don't have any lesions on my side or back (yet). My nursing care is and has been excellent.

My 4 AM blood test numbers have dropped again this morning as Dr. Myint forecasted yesterday. This is despite neupogen injections that I received September 18 and 19. My white blood cell count is 0.5, platelets at 64, and hemoglobin at 8.8.

Jani came and spent most of the day with me. She worked on her projects on the new iPad and I mostly took naps.

Day 6 Evening Update - September 19 2011

My 4 PM blood has dropped some, however, Dr. Myint says this is expected.

I'm really too tired and nauseated to post much right now - but, I will later. jm

I'm back. Jani came around 3 PM and helped me with my shower. I always like showering, however this one wore me out a tad. My skin is very dry and flakey, so Jani rubbed Aveeno Lotion all over which felt wonderful.

Jani left and as always made me giggle - I love my sister!

Day 6 Attack of the Caregiver

Jani attempts to entertain me, costume and all!!!

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 5 - Evening Update September 18 2011

Faye Hummel stayed until 5 PM and helped me with my dinner order. I decided nothing sounded good and ate a small bowl of cereal that Faye got at the store on her way here this morning. Per usual, the food does not help ease my nausea. Nurse Practitioner Carley came in and chatted with me about the nausea. I'd only managed to get almost one bottle water (16 ounces) all day, so Carley decided to increase my IV maintenance fluids from 75 cc/her to 125 cc hour.

My nursing care continues to be top notch. Here are my day Nurse Jennifer at change of shift this evening with Nurse Sherry September 18 2011 7 PM.

They started me on a neupogen shot this afternoon too (I think the dosage was 300 mg). The neupogen is to stimulate my new baby stem cells into action.

My 4 PM blood draw results aren't much different than this morning,

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Day 5 - Visit from Infectious Diseases - September 11 2011

Since I have shingles breaking through yet again, the doctor and her student from Infectious Disease wanted to get my entire varicella (chickenpox - shingles) history before they decided on any long term treatment. For those of you who have not had the shingles - count your lucky stars each and EVERY day. Shingles are quite painful and for me, can be controlled with Percocet to some degree. Amie Meditz, MD, from the UCH Division of Infectious Diseases and her student, Fellow Marci worked several hours on my issues this afternoon.

Dr. Amie Meditz and Fellow Marci

They had me detail all of the steroids I had received since my multiple myeloma diagnosis and all the calendars that I've kept really helped in that history taking department. I also showed the photos of my first shingles breakout August 9 2009 (before my multiple myeloma diagnosis).

Dr. Meditz thinks my really upset stomach from the melphalan has inhibited my body's ability to absorb the oral acyclovir and/or Valtrex I had been receiving. Hence, she wants to treat me with IV Acyclovir for at least week. She feels like the shingle lesions I have on my left thorax below my breast will quickly dry up. Once that happens, I won't have to be in isolation with the yellow gown rule for visitors and staff and confined to my hospital room only.

Day 5 - Afternoon Update September 18 2011

Faye Hummel arrived mid-morning and helped me get myself and my room together. She is easy to be with and such a good friend since Jani cannot come today.

My cousin, Laura Dynia Penney arrived from Fort Collins - so nice of her to visit. She had photos of Nicolle Allagio's wedding and I enjoyed those. I ate my lunch (a few bites of terrible macaroni and cheese and orange sherbet) while she was here and instantly had "nurse and nap" syndrome. Really, REALLY poor company while I was snoring during her visit. Fortunately, Faye was here and they visited.

Day 5 - Morning Update September 18 2011

My 4 AM blood values of today, September 18 2011, continue to drop as expected - blood cells at 0.8, platelets at 107, and hemoglobin at 9.1.

The expected diarrhea from the melphalan has started too, but not really in earnest yet.

Stuck in my delightful Room 1125 because of the new shingle outbreak. All caregivers and visitors need to wear the yellow shield gown and blue gloves if they come in.

I ordered breakfast early and it came fairly early. I was able to eat some of the scramble egg and french toast despite feeling nauseated. I am evaluating the nausea at "6" on a 1-10 scale with "10" throwing up and it just never seems to leave me - full stomach or not.

My new kindred spirit - Shawn visits September 17 2011

Through my blog, a 52 year old woman by the name of Shawn contacted me. She also has been recently diagnosed with multiple myeloma. She is about 1 month behind me in treatment and will be admitted to have her stem cell transplant on October 11th. Shawn came by this evening to visit with Jani and me. We discovered we have the same birthday, DECEMBER 8th which surely makes us kindred spirits. She just lost her hair last week too.

Shawn is headed to Italy for a short vacation before her stem cell transplant. Sure enjoyed her visit.
Now, that I have shingles that are not crusted over, I've been placed in contact isolation. I cannot leave the room and everyone coming in has to wear a yellow gown (note, Shawn is wearing hers as a cape just for the photo) and blue gloves.