Relapsed High Risk Myeloma - Update August 1 2013

Guts a'suffering today and nothing seems to help. I have absolutely no energy today and have been one with my sofa ever since I went to get the mail for my father. My resting heart rate is 84, but the minute I'm up and trying to walk slowly in the house, my pulse jumps to 110 and I have shortness of breath.

Working hard on the Ancestry stuff, making a timeline is really helping. 

My brother, Jeff, is arriving from Colorado this afternoon, but I'm just too tired to go over to Dad's for the official greeting. Jani will take a photo.

We have at least one bomb sniffin' dog check each new arrival out.

Going to Lost Rivers Medical Center tomorrow for a blood check. Although I don't think I'll need  platelets because I haven't had any bleeding, I do think I need 1-2 units of packed irradiated red blood cells for ENERGY. I'm quite short of breath with walking right now.

Relapsed High Risk Myeloma - Update July 30 2013

Labs drawn at Lost Rivers Medical Center Lab this morning. They called Dr. Padavanija's office at St. Luke's and we decided that I did NOT need a blood transfusion, nor a platelet transfusion today. My platelets are 17 (norms 140-440) and that is good for me. My hemoglobin is a tad low at 8.8 (norms 12-16), but I usually don't get a blood transfusion until the hemoglobin is well below 9.0.

So, Jani and I drove home to Mackay and we will return to Lost Rivers Medical Center Lab on Friday, 2 August 2013  to have my blood rechecked...happy all around for today. If, on Friday, my values have dropped, we would go on to St. Luke's in Twin Falls and get the necessary transfusions.

I'll just take it easy around here and work on the computer. 

Jani took the dogs on a walk and then went golfing.

And then, I was hit with one of my heart pain attacks.
I was a SEVERE episode of what I call "HEART PAIN". This is the 6th episode of "heart pain" that I've had since my myeloma diagnosis (24 May 2011). At least 2 of the episodes have been witnessed by nurses and doctors at the University of Colorado Hospital in Aurora, Colorado.

1. 30 July 2013 (here in Mackay, Idaho)
2. 19 June 2013 (here Mackay, Idaho)
3. 24 May 2012 (while inpatient at UCH for 2nd autologous stem cell transplant)
4. 18 April 2012 (in Greeley, Colorado at Jani and Robbyn's house)
5. 17 Jan 2012 (here in Mackay, Idaho and Ron took me to Idaho Falls ER)
6. 15 Sept 2011 (while inpatient at UCH for 1st autologous stem cell transplant)

These episodes of "heart pain" are ALL SIMILAR and resemble what I image a heart attack would be like. I have severe pain along a circumference band just below both breasts and radiates up to my right jaw line and teeth. It is terrible pain and takes my breath away. I feel some better if I sit up , but not really. Since I've had 2 of these episodes while hospitalized a the University of Colorado witnessed by the nurses and doctors, I sort of know what to do when it happens. In those episodes, they worked me up heart attack with EKG, heart ultrasound, lung CT Scan, and blood tests and everything was normal. 

Tonight, I took:

1. Famiciclovir (shingles prevention which was due at 2 PM)
2. Pepcid 20 mg
3. 1/4 Percocet and 1/2 Oxy 325
4. AND a BIG DOSE - "stay clam Jude, you are not dying"

The entire episode lasted just about 45 minutes and then I was essentially fine, but TIRED.

I remember reading on the Multiple Myeloma Beacon (http://www.myelomabeacon.com FORUM section about other myeloma patients experiencing similar episodes when taking Revlimid (although, I am taking Pomalyst now) and being treated in emergency rooms, only to be told nothing was wrong with them. Here is the link: http://www.myelomabeacon.com/forum/chest-pain-as-a-side-effect-of-revlimid-or-velcade-t1700.html?hilit=chest%20pain

I liken these "heart pain" episodes to something VERY SIMILAR to the spasms and cramps I get in my legs at times. Terrible spasm pain followed by aching pain followed by "normal" (whatever that is). But with the "heart pain", there seems to be little I an do to "stretch" the pain away. It is SCARY and PAINFUL. And, I had a very bad night.

Relapsed High Risk Myeloma - Update July 22 2013

Woke this morning after a restless night and could not breathe out of my left nasal nare at all. I, VERY GENTLY BLEW my nose and a huge wet blood clot emerged. It was about 2 inches by 1 inch and 1/4 inch thick. WALLA, I could breathe instantly and no new bleeding!

Jani and Robbyn drove me to the Lab at Lost Rivers Medical Center in Arco, Idaho to get my CBC as scheduled. My platelets were MISERABLY LOW at 9 (as low as I have ever had). The report said "Critically Low" and they called the value in to St. Luke's MSTI. They reported the value to physician, Banu E Symington, MD that covers for my oncologist, Dr.Padavanija who does not work Monday's and they decided I could wait until Thursday to have my platelet count rechecked on Thursday in Twin Falls, Idaho. I need "rescue platelets" to stay alive and that is obvious, but will just rest quietly until then.

Robbyn's departure photo from Mackay to Colorado. She is driving a rental car to the Idaho Falls Airport and then on to DIA in Denver to pick up her car at the longterm parking there. We will miss her!

Jani and her iphone apps - CUTE!

Spent the rest of the day on the sofa and had no new bleeding from my nose or throat. Unfortunately, the Z-Pack antibiotic (which I started 18 July 2013 and completed 22 July 2013 didn't completely knock my sinus infection and I'm going to request a refill Z-Pack tomorrow. I still have brown-green sinus drainage, but not that much now. My left front sinus is completely encased and cannot drain without surgery and right now I am NOT a surgical candidate with a platelet count of just 7.

Relapsed High-Risk Myeloma - Update - May 28 2013

Woke to new snow on Mt. McCaleb above Mackay, Idaho this morning and 36 degrees. Poor lilacs just began to bloom 2 days ago.

Jani and I drove to Lost Rivers Medical Center and I had my CBC (complete blood count) done. I was hoping for higher values because I feel pretty well.

My white blood cell count is 3.4 which is low for me, but good at the same time (norms 4-11.2); ANC (Absolute Neutrophil Count) 2.00 which is normal and no mask necessary this week (norms 2-8); hemoglobin low at  9.5, but my blood transfusion threshold is 9.0, so won't need that today (norms 12-16); and platelets STILL MISERABLY LOW at 31 YET HOLDING, so more sofa time for me now to prevent bleeding (norms 140-440).

So, we didn't have to travel on to St. Luke's Hospital in Twin Falls today.

Blood Check Today Keeps Me In - January 11 2013

Drove on icy, windswept road to Arco (30 miles) to get my blood checked. 

The snowplows were out.

My white blood cell count was just 1.7 which Lost Rivers Medical Center lists as "CRITICAL LOW" (norms 4-11.2); hemoglobin low at 9.0 (norms 12-16); platelets low at 32 and also listed as "CRITICAL LOW"; Absolute neutrophil count (ANC) low at 1.04 (norms 2-8). 

So, this means that I have to stay away from sick folks, wear a mask in public places, and be careful not to bump myself with such low platelets (clotting ability very limited).

As I was driving home, RN Vicki called me from Dr. Padavanija's office in Twin Falls because Lost Rivers Medical Center Technician Diana called them to let them know the results of my blood draw. I will hold my Fragmin tonight and start back on 1/2 dose, 7,500 units tomorrow. I will have my blood drawn in Arco next Wednesday morning and if my white blood cell count is less than 3.0 and my platelets still low, I won't go to chemo in Twin Falls - we'll just HOLD the chem until my bone marrow can respond.

The road home was just as bad as the road there...probably not the best idea for a gal with a platelet count of just 32 to be out driving on....hummm. I only went for the ordered blood draw because I wanted to know if I had enough platelets to get on my 4-wheeler with the snowblade and move some SNOW -- but, 32 if probably too low to be bumping around in the snow on the 4-wheeler...so, it is one-with-the-sofa for me for the rest of the day.

Highway 93 north between Arco and Mackay. 11:30 AM 11 Sept 2013

 Downtown Mackay, Idaho around noon 11 January 2013.

All My Values are Lower and So is My Energy - November 16 2012

Went to Lost Rivers Medical Center this morning and had a CBC (complete blood count) drawn to check my platelet count. My white blood count is lower at 2.4 (norms 4-11.2); hemoglobin lower at 10.5 (norms 12-16); and platelets low at 50 (norms 140-440). I wore my mask and and was glad I did since a lady came in and was coughing away.

With my platelets at 50, I'll cut my injectable Fragmin dosage to 7,500 units tonight.

I don't have a lot of get up and go - probably because my hemoglobin (oxygen carrying) is lower at 10.5. Had a nadir this this afternoon. Didn't walk today, but I did walk Kemmer 0.44 miles last evening just before dark.

Low Platelets - November 9 2012

We had snow during the night, but the roads are not bad this morning. I drove to Lost Rivers Medical Center in Arco, Idaho to have a CBC (complete blood count) drawn. Two pokes later, I had the results. 

My platelet count is down to 40 (norms 140-440). They called Dr. Padavanija's office at St. Luke's Hospital, Twin Falls, Idaho. RN Ann called me and we reviewed how I should proceed with my medications in light of my platelet count:

Platelet Count Greater Than 50 - Take Fragmin 15,000 units
Platelet Count Less Than 50 - Take Fragmin 7,500 units
Platelet Count Less Than 30 - Hold Fragmin and Revlimid

The rest of my CBC wasn't too bad. My white blood cell count is low at 3.1 (norms 4-11.2) and hemoglobin is low at 10.4 (norms 12-16)

I came home and WAITED ALL DAY for FedEx to deliver my next month's supply of Revlimid. They NEVER ARRIVED and I finally spoke to them on the phone. Evidently, there were weather-related delays which prevented the delivery and they plan to delivery Monday  11/12/12 now. I told them the medication was pricey ($6,000 for a 21 day supply) and they cannot let it FREEZE - probably fell on deaf ears~

Darkness fell and I decided Kemmer needed a walk after all that waiting today. We just walked the neighborhood for 0.44 miles. Lots of mule deer wandering around at that time of the evening, but Kemmer is so good not to chase them!

My wonderful neighbor, Pam Denning Lords replaced the broken zipper on my favorite down jacket and delivered it to me today! You can't see the zipper too well in the photo below - but, it is awesome!!  THANK YOU PAM !!!

Creatinine Dropping and Faye Hummel Travels Home - October 20 2012

Up early with Faye Hummel.  A tad of new snow on the mountains this morning, but only a low of 40 degrees here in Mackay.

We went to Lost Rivers Medical Center in Arco, Idaho (30 miles) and I had my blood drawn for creatinine and BUN. Dr. Clay Smith at UCH wanted me to get intravenous fluids if my creatinine was over 1.2.  The blood draw went well with one poke and my creatinine was right at 1.2, so I did not need the intravenous fluids. I'm still sure the creatinine was-is increased from the Zolinza (vorinostat) and once it clears my system, hopefully, my kidney's won't be damaged.

I drove Faye on to the Idaho Falls Airport so she could catch her flight to Denver, Colorado.We went to Taco Bell for lunch - OUR FAVORITE and then I dropped Faye at the airport. 

I drove home (100 miles) - it was 60 degrees in the Big Lost River Valley and partly cloudy.

Highway 93 to Mackay from Darlington October 20 2012

It has been a whirlwind week with a lot of driving, lots of tests, and I'm glad to be HOME. Thankfully, I have such good friends to help me!  I did laundry and didn't need a nadir (nap).
My trees still have their leaves.

2nd ASCT - Day 63 - July 20 2012

Well, if having multiple myeloma wasn't ENOUGH...
Jani left me alone for the 1st time today and went lumber jacking with Ron over in the Pahsimeroi (just over an hour away from Mackay, Idaho).

 All I had to do while Jani was gone was walk the dogs. I got a late start and didn't get up on the Mine Hill until just before 1 PM. All was going well until I slipped on some gravel and land directly on my forehead HARD on the dirt and rock road! Instant blood. I didn't lose consciousness, but I did feel sorta sick to my stomach. I had a little scrape on my right leg and right elbow, but neither were bleeding...just my forehead. Since I'm on daily Fragmin injections (blood thinner for my right atrial clot) I applied pressure to the bleeding area with a mask (all I had in my pocket)...and they are not absorbent. Walked back to Jonah (the car) trying to decide what my next course of action would be.

I drove to town about 1 mile away and found local EMT Cindy Kimball who suggested that I go to the Mackay Clinic for attention. So, I took the dogs home and stopped at my neighbor's house, Wayne Olsen and asked him if he could drive me. The Mackay Clinic was closed (Friday afternoon) so we drove 30 miles to Lost River Medical Center in Arco where I was seen in the ER by Nurse Practitioner, Hyrum Davenport.

When you've just had an autologous stem cell transplant, insults like this require A LITTLE MORE ATTENTION. The nurse practitioner in Arco talked to the inpatient transplant nurse practitioner at the University of Colorado Hospital since the transplant clinic is closed on Fridays to make sure I was assessed and treated appropriately. They decided to stitch the laceration closed since I'm allergic to adhesives, especially steri-strips; put me on 7 days of Augmentin, and send me 100 miles away to have a CT Scan of my head to assure I was not bleeding beneath my skull. 

 Just 3 sutures.

Poor Wayne Olsen...my driver...a short trip became a LONG TRIP.

I was seen at the Blackfoot Bingham Memorial Hospital ER by Dr. Allen (the same physician who diagnosed my first impending shingle outbreak about a year before I was diagnosed with multiple myeloma). He ordered the CT Scan of my head which thankfully was completely normal. He wanted me to have tetanus shot and I called the transplant nurse practitioner at UCH again to see if that would be okay. After some consultation, they decided the tetanus shot would NOT hurt me, but it would probably not give me any immunity since I don't have any functional immunoglobulins. So, the nurse said he had to give me the tetanus shot in a muscle and I said, "Good luck finding some muscle!) Ended up giving me the injection in my right deltoid (arm) muscle.

Back to Mackay and Jani was home ... NOT HAPPY WITH ME AT ALL ... "leave you alone for a nanosecond and look what happens!"

By this time the lidocaine used to put the sutures in had worn off and I felt like I had been hit in the head with a board! Every time I make ANY facial expression it seems to spasm in pain - plus I have a an underlying right sided headache. Local EMT, Cindy Kimball stopped by the house to see how I was doing which was nice.

Oh the JOY OF BEING ME~

2nd ASCT - Day 39 - June 26 2012

Jani took me to Lost Rivers Medical Center in Arco, Idaho (30 miles) to have my weekly blood draw. Technician Diana got my blood on the first poke and we were quickly on our way.

All of my blood values are NORMAL!!!!!  Well, my white blood cell count is a tad low, but okay for me at 3.6 (norms 4-11.2). My hemoglobin is 12.9 (norms 12-16) and my platelets are normal 247 (norms 140-440). And most importantly, my creatinine which was too high last week is back in the normal range at 1.0 (norms 0.7-1.2) as is my phosphorus at 4.2 (norms 2.5 -4.5). Both the creatinine and phosphorus are indicators of kidney function. I also had abnormally high liver enzymes last  week and they are normal this week (ALT/SGOT is 51 (norms 9-52) and AST/SGOT is 33 (norms 14-46). So, it was a good week for MY BLOOD!

On our way home from Arco, we had to wait a short time on Highway 93 while a few cows were being moved. Idaho has open range laws and livestock always has the right away EVEN if they are unattended by humans.

I still do not have the results of my multiple myeloma blood tests (m-spike, immunoglobulins, free light chains) drawn last week on June 19 2012 at MSTI in Twin Falls, Idaho. I called and the nurse called me back late tonight indicating the results would be faxed to me - but, none yet.


The wind let up this evening and I was able to walk Kemmer around the block. We have been stuck inside due to high winds with dust and blowing for several days.

Blood Work and A Walk - February 1 2012

Drove to Lost Rivers Medical Center Laboratory in Arco, Idaho today for my weekly blood draw. Went well on first poke with 24 gauge butterfly in my right hand.

As soon as I got home I received the fax with the results. My white blood cell count is still low at 2.5 (norms 4-11.2), my hemoglobin normal at 14.5 (norms 12-16); and my platelets are tad low at 139 (norms 140-440).
 

All of my comprehensive metabolic values are normal, as is my LDH, Uric Acid, Phosphorus, and Magnesium.

 When I got home, I walked Kemmer 1.18 miles to the Big Lost River Smelter Bridge.

 We startled two ducks in to flight. Remember, you can click once to enlarge photos and twice to enlarge them to original size.