Summary February 8 to February 12 2013

February 8 2013: Couldn't sleep last night and finally got up at 3:15 AM...might as well do something than fret that I cannot sleep. 

My guts are hurting. I took Pepcid on top of Zantac and Prilosec with a little relief. The burning sensation in my stomach with pain that radiates around my chest feels best when my stomach is FULL. 

I noticed today for the first time a little bit of hair in the shower drain - the first hair that I've lost since March 2012! I think this is just normal hair growth and loss.

February 9 2013: Slept much better and have a lot more energy today. Continued gastritis and I took Pepcid again. Worked all day on my medical deductions for my taxes and I'm almost finished.

February 10 2013: Again, slept better and my energy seems good. Revlimid Day 12/21 and diarrhea as usual. Continued gastritis.

The bruise by my Bard Power Port continues BRUISED.

I can take Dex 10 mg on Sunday's, but decided not to - mainly to control my appetite.

I walked Kemmer 1.28 miles. Windy and cold.

Mine Hill from Big Lost River Smelter Bridge Feb 10 2013

New hat from a friend in Alaska. She made it!!!!

February 11 2013: Woke really TIRED this morning. Finished up my taxes and got them in the mail this morning - YEA!

The injection sites on my abdomen have been oozing a little bit of blood (very little), so, I think my platelets must be low. I only gave myself 7,500 units of Fragmin tonight instead of the normal 15,000 units. Called and ordered more Fragmin which will be delivered Friday, 15 Feb 2013.

No walk today because it is just too cold outside.

February 12 2013: 
Bruise continues next to my Bard Power Port, but it starting to change colors in healing.

2nd ASCT - Day 92 - August 18 2012

Rested most of the afternoon by scanning a gazillion Mackay Idaho photos and stories. Check out my Mackay Idaho 83251 blog if you're interested in Mackay history and current events at http://mackayidaho1.blogspot.com/ 

Poor Kemmer needed a walk, so around 6 PM, we STROLLED and I mean STROLLED SLOWLY to the Big Lost River Smelter Bridge and HIll of Dreams (1.38 miles). That makes 4.48 miles for me today. The only thing that bothers me is my mid-back by my scapula and that's only a little pain. A lot less of the forest fire smoke this evening and lots of people were out an about.

My gastritis is back and I happily take my Prilosec and Zantac every 12 hours with a Pepcid thrown in too mid-day.

2nd ASCT - Day 36 - June 23 2012

Feeling much better. My stomach is still raw, but the Prilosec and Zantac on a regular schedule twice a day seems to be helping. Jani and I went to the 67th Mackay Idaho Rodeo Parade this afternoon. I visited with lots of people and it was wonderful. To see all of the parade entries go to http://mackayidaho1.blogspot.com/

My little apricot trees planted 14 months ago have apricots on them now - so exciting!

Jani and I walked the dogs this afternoon. I wore a mask because it is windy here - but, warm.

 Jani playing frisbee with Zoe.

Walked 2 Miles and Gastritis - February 2 2012

I managed to walk 2.00 miles from home to the Mine Hill and back. It was a bit of trudge with the wind and I am not breaking any land-speed records...but, I am out and moving. The road (normally dirt) is covered with a glistening coat of ice and snow and my Yaks are essential.

Kemmer wants to go higher like we used to do - in time, we will girl!

My gastritis from Revlimid (Day 3 of 14 in Maintenance Chemo Cycle 3) is back and I'm taking Prilosec 40 mg with Zantac 150 mg (on an empty stomach for best results) twice a day. 

So, How Do I Feel - January 27 2012

My cold seems to be over and I took my last dose of the 10-day course of Augmentin this morning. Mornings are best for me. I have pretty good energy and manage to get all of my household chores completed and a walk with Kemmer in each morning. I am still bothered by an aching left leg which I'm more aware of each evening and night. I'm taking Tylenol 500 mg for that twice during the night. My acid stomach still bothers me, but a daily dose of Prilosec 40 mg and 150 mg Zantac seems to keep that in check. My skin is extremely dry and living here in ultra-dry Idaho doesn't help - using lots of lotion, Aspercreme ointment, and sunscreen (I use Coppertone Water Babies for children because it does not sting my eyes and right now the only part of me exposed to the sun is my face, neck, and occasionally my hands. The neuropathy in my fingertips continues and is LOTS worse when my hands get cold. By 7 PM each evening my energy is toast and I often fall asleep on the sofa before I go to bed.


Today was another beautiful one in the Big Lost River Valley and I managed to extend my walk to 1.80 miles with a 100 foot gain in elevation (20 degrees with a nice icy wind, but I was dressed appropriately and stayed warm).

Day 91 - A Yippee Kind of Day - December 13 2011

UCH scheduled my Bard Power Port removal for this Thursday, December 15 2011 - Yippee!

I'm going home to Mackay, Idaho on December 27th! My Transplant Nurse Coordinator, Lindsey, and Social Worker, Amy, are making all the arrangements with my new oncologist in Idaho Falls, Idaho, Christian Shull, MD. So, I'll finish out my first month of maintenance Velcade/Dex/Zometa/Revlimid chemotherapy and head home the next day. I've been gone since May 11 2011.

Yippee! The Prilosec 40 mg and Zantac 150 mg one hour prior to my Velcade/Dex yesterday worked magic and I did not have ANY acid burning in my esophagus and stomach like I had in Week 1 Month 1.

And, another Yippee! I bought a new 15 inch MacBook Pro laptop with all the same software in Apple versions today! They threw in a new printer and scanner for free. I went shopping fully intending on getting a new Dell PC, but I (well, maybe Jani twisting my arm a little) decided that if I was going to have to learn the new Windows operating system (I have Windows XP on this old laptop I'm using now) that I might as well learn the MacBook Pro way. They had to order my MacBook Pro today, so I won't get it until just before I leave for Idaho. However, they are taking all of my external harddrives (I have 4) and converting the files from PC to Apple in some way, so when my MacBook Pro arrives, I'll be able to read my many files. However, if my blog ceases, you can pretty much bet, I'm somewhere on the learning curve. Jani is a MacBook Pro user and I'm going to start taking some kitchen counter lessons beginning tomorrow.

Jani and I baked Gramma Rebein Christmas Cookies today for neighbors...and they turned out wonderful the first time...we usually can't remember how to make them each year --- but, we did good this year on the first attempt!



Day 66 - Walked 1.10 Mile November 18 2011

65 degrees here in Colorado this afternoon - a perfect day for walking the dogs. Easily walked 1.10 miles without any chest pain and only mild upper left back pain.

My stomach is almost 100 percent these days. I'm down to just 40 mg of Prilosec twice a day and stopped taking the Zantac 150 mg. I'm desiring more foods than before and my taster seems to be working fine.

Faye Hummel stopped by with her new iPhone 4S, so we had to do a photo with it.Faye and I will be 61 years old the first week in December --- we cannot believe it~

Day 29 - Update - October 12 2011

Jani drove me to UCH in Aurora, Colorado for my follow-up appointment with Dr. Han Myint. We went early, so we could have a chance to visit with another multiple myeloma patient, Shawn Egle, who had her stem cell transplant yesterday, making today Day 1 for her. It was wonderful to see Shawn and she is doing well. However, she had have an x-ray procedure and they arrived to take her down for it just minutes after we arrived. So, Jani and I walked along with the wheelchair transport for Shawn to the basement where radiology is located so we could visit a few minutes longer.

Got my blood drawn, the dressing over my Trifusion Hickman Catheter changed (needs to be changed weekly), and my Bard Power Port flushed for the month (if not used, needs to be flushed and heparin locked once each month).

Jani and I checked in early for my 4:05 PM appointment with Dr. Myint and to our surprise they took us back to an exam room about 20 minutes early. Nurse Practitioner Diana Vurcurevich met with us and examined me. Then, Dr. Myint came in and joined us. Both Dr. Myint and Diana said my nausea and epigastric pain should have resolved by now since the transplant. Easy for them to say....I'm still suffering....We went over my medications and they said I could double my dose of Prilosec to 40 mg twice a day along with 150 mg of Zantac twice a day (recommended that I take the Prilosec and Zantac together on an empty stomach 1 hour before I eat. They also said I could take liquid Mylanta in between.

We discussed the possibility of having an EGD scope (swallow the camera test), but when I told them that I just had an EGD on May19 2011 with normal results (nothing visualized, no H. Pylori and no Celiac Disease) they decided a scope was not necessary at this time.

My blood values are okay and unremarkable. My platelets are in the normal range at 174 (norm is 150-400), my hemoglobin is a tad lower than a week ago at 11.5 from 11.8, but okay, and my white blood cell count is slightly lower at 2.6 from 2.8 a week ago. Dr. Myint says this is all normal, but he does expect my white blood cell count to rise to normal limits.

My ANC (Absolute Neutrophil Count) is fine at 1.5 - just need to be cautious and stay away from groups of people and to wear my mask when I am around people. That 3.1 value on Oct 1st is a neuopogen effect from an injection on Sept 29 2011.

I asked Dr. Myint why I'm having a bone marrow biopsy at Day 60 vs Day 100 and he said it is because of my cytogenetics (bad DNA findings) and he wants to see if the stem cell transplant put my cytogenetic findings into remission. If the bone marrow on November 2 2011 is clear of cytogenetic findings, then I will not need a 2nd transplant. However, if abnormal cytogenetics are found, then I'll have the 2nd transplant mid-November. Dr. Myint reminded me that the stem cell transplants are not a cure for my multiple myeloma - just a method to get my myeloma into remission. After the 1 or 2 transplants, I will have to be on maintenance chemotherapy of Velcade, Decadron, and Revlimid for 2-3 YEARS~! Oh Joy~

Jani didn't have to wear a mask, but she wanted to. I have to wear a mask any time I am at UCH for any thing.

They decided that I didn't need to return to see them for 2 weeks. So, Jani and I went back up to the BIC (blood draw area) and asked the nurse to give us the supplies to change my Trifusion Hickman Catheter at home next week, since the dressing needs to be changed weekly. The nurse reminded us that it needs to be done with sterile technique and we assured her that we could get it done.

Chemotherapy Day 3 Cycle 1 Post Heart Burn June 21 2011

I woke at 1:30 AM with terrible burning heart burn that I couldn't relieve with eating (peanut butter sandwich and chips). I used pillows and propped myself up in bed more - but, nothing seemed to help. I took Prilosec which helped a tiny bit. This morning, I took a Zantac and that seemed to help me more.