Relapsed High Risk Myeloma - Update August 18 2013

Woke this morning with such a ROTTEN sore throat that I needed to get a glob of old blood and mucous out - it just chokes me.  And it was a lot thicker than it looks in this photo. I had another episode while showering today,

I tested my blood sugar at 7:45 AM  (this the before breakfast check) and it was 128, so, I didn't require any insulin.

I was unable to eat my toast and barely able to down my 6.5 dex;. In fact, I had to give taking the pills a couple of tries.

Being a Type 1 Diabetic is  no fun - in fact, it might be a whole LOT LESS FUN than having multiple myeloma. I checked my blood again at 10 AM and needed 2 units of Novalog. Since I did not sleep last night, I napped several times today. 

Jani worked on cleaning the barbecue on my back porch even though the air quality is so poor outside due to the Ketchum Sun Valley forest fire which has consumed over 100,000 acres and is TERRIBLE on the air quality ~ just 50 miles north and west of Mackay, Idaho. 

I'm most likely a diabetic now because of the dex I take every other day. I had been taking 10 mg every other day and now they have lowered my dex to 6.5 mg every other day.

Slowly, my SORE THROAT has been improving today. I've had no more discharge from my throat since I showered. 
.

2nd ASCT - Day 12 - Discharge from UCH to Marriott Residence Inn May 30 2012

My cousin, Diane Dynia Miller came by to help Jani with the discharge stuff. We had lots of stuff after 20 days in the hospital. I had a terrible headache, but I smiled for the photos despite feeling like crap.

Jani packed up my 1126 UCH Room and were discharged by RN Jen at 3 PM - right on schedule. I did not wheel that cart.

We drove to the Marriott Residence Inn and checked in, Diane and Jani brought all our stuff in and I went to bed with an ice bag on my aching head. Diane stayed with me in the room while Jani went to the grocery store.

UCH Hospital in relationship to Marriott Residence Inn

Back in Greeley, Colorado April 17 2012

Back in Greeley, Colorado. Still pretty sick to my stomach.

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.

Day 21 - Free at Last - October 4 2011

Just got the news we really wanted, I can check out of The Timbers and head home to Jani and Robbyn's house in Greeley, Colorado - FREE AT LAST - October 4 2011.

It took Jani 2 hours to pack up all our stuff and drag it out to the car. She is awesome!

 And, did I mention STRONG~

 Her organizational gene kicks in on tasks like these and she gets EVERTHING in!

Can't see out the rear view mirror - but, all the stuff is "in Bart".

 And last, but not least jm with Jani a pushin', leaving The Timbers October 4 2011

We pulled away from The Timbers at noon, headed for home in Greeley, Colorado.

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 14 Discharge from University of Colorado Hospital September 27 2011

 "I want out that door". My discharge was scheduled for noon and I was ready!

 Jani hauled the last of my things out to the car with her rolling dolly.

 Really hard to do the hand foaming as she leaves the room with the rolling cart - what a good sport - that Jani!

Nurse Sarah discusses the discharge instructions with me. Arrangements had been made with a home health care agency to come to the The Timbers to give me intravenous Foscavir for my shingles. Then, the social worker, Melissa, came in and said the medication was unavailable (it is difficult to get in the U.S.) and they were going to have to come up with another plan for my shingles therapy. Hence, my discharge was delayed more than 4 hours!!!!! At one point, after I was officially on paper discharged - it looked like they might re-admit me just to give me the shingles medicine through Thursday September 29. I remained calm and told them if I had to stay - they owed me a trip outside in to the air - at the very least. Finally, all the powers that be decided that I could be discharged on an oral shingles medicine called Famciclovir - WooHOO!

 jm with mask on as I leave the University of Colorado Hospital Room 1125. It's difficult to see with the mask - but, I'm grinning ear to ear!

 I sat down in the Atrium area of the hospital while Jani went to the Atrium Pharmacy for the 3rd time today - to pick up the shingles medicine. That piano plays all by itself. I have to wear a mask whenever I'm going to and from the hospital from now on.

Hallelujah - AIR AT LAST - I'm outside again and loving it!!!!!

Day 14 - Morning Update - Discharge from Hospital Day September 27 2011

My new baby stem cells are doing great! White blood cells are 2.8 and my absolute neutrophil count (ANC) is at 2.5. However, I remain anemic with a hemoglobin of 9.5 and my platelets are flat at 19. I will be getting a platelet transfusion this morning before I am discharged from the University of Colorado Hospital to stay at the The Timbers Hotel.

I received a platelet transfusion at 7 AM which brought my platelet value from 19 to 41.

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.

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

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.