M-Spike Results from December 1 2011 Results

My M-Spike results from December 1 2011 (Day 79) are back. My value continues at 0.1 which is excellent. I still have mild hypogammaglobulinemia at 0.4 (norms (0.5-1.6), however, this considered just part of recovering from the stem cell transplant done on September 13 2011. My initial M-Spike on diagnosis back in May 2011 was 3.0.

My Free Light Chains over time May 18 2011 (diagnosis) to November 9 2011

My Beta-2 Microglobulin Results over Time June 15 2011 to November 9 2011

Day 80 - Taco Bell Makes Everything Better - December 2 2011

Since my white blood cell count is 5.1 (norms 4-11.1) and my Absolute Neutrophil Count is 3.9 (norms 1.8-6.6), I don't have to be as careful with my diet as I have since my stem cell transplant 80 days ago. Technically, they advise no eating out for 100 days post-stem cell transplant.

I decided that my first trip to Taco Bell since before my transplant would make me feel better about having to stay in Colorado for another month...and it worked!

You can see that my hair is growing too - looks like I have a bald spot on top, but that's just super white hair that doesn't show up very well in the photo.

Day 80 - Bummer News - December 2 2011

My UCH Nurse Coordinator just called with the results of my echocardiogram done yesterday. The large blood clot in my heart has reduced in size by 2/3rds since it was discovered November 2 2011. The inside measurements of the right atrium of my heart are 4 x 4 cm. The clot was originally 1.3 x 2.7 cm - so in proportion to the size of my atrium - it was big.

In light of the continuing clot, albeit much smaller, they want me to stay locally here in Colorado for another month before I travel home to Idaho - bummer for me!  But, I've been gone for so long now (since May 10 2011), what's another month???

They want me to start my maintenance Velcade/Dex chemotherapy at UCH next week and they are ordering my Revlimid 10 mg to be delivered here in Greeley, Colorado.

Day 79 - Bone Marrow Biopsy Pathology Report from November 2 2011

I finally got my surgical pathology results from my bone marrow biopsy done on November 2 2011. Even though it indicates that I have less than 1 percent residual plasma cell myeloma, I'm still considered in complete remission. This is the nature of multiple myeloma - extremely hard to eradicate. The stem cell transplant was just a treatment and not a cure. This is why I'll be on maintenance chemotherapy for at least the next 3 years. My maintenance chemotherapy will consist of Revlimid 10 mg by mouth 14 days on and 14 days off each month and Velcade intravenously 1 mg/metered squared once a week for 4 weeks and 8 weeks off - then cycling again with 4 weeks on and 8 weeks off.

Day 79 - December 1 2011

Well, we made it to UCH in Aurora, Colorado today in a snow storm. from Greeley,Colorado. 

I had the repeat echocardiogram by the same nice technician, Tracy,  that I had on November 2, 2011. She is very skilled and knowledgeable. She thought I might have the results by the time I met with Dr. Myint.

Had my blood drawn out of my Bard Power Port and then went for my appointment with Dr. Myint. My hemoglobin is normal  at 12.7 (no more anemia), my platelet count (bleeding) is normal at 206, and my white blood cell count is also normal at 5.1. They said it was safe to start eating fruits and salads again.

Unfortunately for me, Dr. Myint did not yet have the echocardiogram results at the time of my appointment. So, I still do not know the status of the blood clots in the right atrium of my heart. Karley, Nurse Practitioner said she'd call me with the results tomorrow. So, I still do not know if I can go home to Idaho.

I had several pages of questions and Dr. Myint and Karley, NP stayed long enough to answer EVERY one of my questions. Dr. Myint never seems rushed during my appointments and I appreciate that.

They gave me a flu shot and told me that I would have all of my immunizations 1 year after my stem cell transplant which was on September 13 2011.

More about my appointment tomorrow.

Day 78 - November 30 2011

I walked 1.10 miles with the dogs this afternoon. We are expecting a blizzard tomorrow, so we are hoping we have no difficulty getting to UCH in Aurora, Colorado for my repeat echocardiogram and doctor's appointment in the afternoon.

Jani and bought pressure cookers today~

Day 77 - November 29 2011

The University of Colorado Hospital called this morning and scheduled my repeat echocardiogram to evaluate the blood clots in my heart for Thursday, Dec 1 2011. They should have the results available by the time I meet with Dr. Myint later that afternoon.

My Trifusion Hickman Catheter site is healing and is scabbed over finally. The intravenous catheter was pulled one week ago today.

I walked 1.10 miles again this afternoon. I do have a very slight left-sided chest pain and pain across my left scapula when I walk - but, maybe it is in my mind....

Day 76 - November 28 2011

Well, my experiment with 12.5 mg of Benadryl last night DID HELP me sleep. I actually slept 5 straight hours without getting up! I had a bit of a headache when I woke, but after my morning coffee, I was fine.

On this Day 76, I walked 1.10 miles today with the dogs. I just had to! I'm still worried about the blood clots in my heart - but, I just had to take the maybe risk. Still haven't heard from scheduling about my repeat echocardiogram.

Day 75 - November 27 2011

Now, I seem to be reacting to my own silk Durapore tape - so, did away with the entire bandage today, Day 75, over my Trifusion Hickman Catheter site. It is no longer draining at all. I can actually mash on my chest over the site with only slight tenderness.

I have not been sleeping well EVER. My usual pattern is 2 hours of sleep - UP - 2 more hours and UP, etc. etc. So, I bought some children's liquid benadryl today and plan to take 12.5 mg (usual adult dose is 25 mg) at bedtime.

Day 74 - November 26 2011

My Trifusion Hickman Catheter site continues to have a bit of drainage today, November 26 2011 (4 days after it was pulled out). However, my left chest is a lot less tender today. I'm sure the blood thinner injections of Fragmin are slowing down the scabbing over process the hole needs. Daily Fragmin injections are no fun - tiny little needle with a BIG STING!

 November 26 2011

Day 73 - November 25 2011

The hole left behind after pulling my Trifusion Hickman Catheter is still leaking a bit of slightly bloody fluid - but, it is alot less sore today.

Busy organizing South Custer Historical Society (Mackay, Idaho) computer files on a new 2 TB external hard drive. Finally, my stomach is good and I can pretty much eat anything now.

Day 72 - I AM GRATEFUL - November 24 2011

And, although I still look bald from a distance, my hair is growing.

Day 72 - Dressing over former Trifusion Hickman Catheter Site - November 24 2011

As instructed, I left the dressing over the Trifusion Hickman Catheter site in place for 24 hours. They had it cover with a green film and sure enough, my skin reacted to it.

I covered it with a gauze and my silk tape. The dressing is supposed to be exposed to the air and not covered with plastic film like Tegaderm.

The culture they did of the end of the Trifusion Hickman Catheter came back today with NO GROWTH - which is excellent.

Day 71 - Worry - November 23 2011

I'm worried about the status of the blood clots in my heart. The removal of the Trifusion Hickman Catheter went well without any imaging - so, we do not know the status of the blood clots in my heart that were detected via echocardiogram on November 2 2011 and MRI November 3 2011. I've been taking Fragmin (blood thinning) injections daily since November 2nd.

I emailed my transplant nurse coordinator about my apprehension. As a result, they have ordered a repeat echocardiogram. I have to wait for the echo lab to call and schedule the actual appointment.

I really want to travel home to Mackay, Idaho after my December 1 2011 appointment with my transplant doctor, Dr. Myint. However, if I have potentially dangerous blood clots, it probably would not be a good idea to be home in Mackay where I'd be a 100 mile drive from the doctor in Idaho Falls. So, I'm keeping my fingers crossed that the clots are resolving and this will all be a non-issue by then end of next week.

Day 71 - Dressing over Trifusion Hickman Catheter Site - November 23 2011

I slept much of the evening last night which was nice. My left chest is sore and I took 1/2 pain pill twice in the night. I haven't had any shortness of breath. Today, the dressing over the site of my former Trifusion Hickman Catheter has a little more serous drainage. I've been instructed to keep the Tegaderm dressing on for 48 hours and not to get it wet (no shower). I supposed to take the dressing off tomorrow and put a new one on with just a gauze and tape - no tegaderm.