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.

24 Hour Urine Results from November 16 2011 Are Back - Day 64

The Urine Protein Fractionation from my 24-hour urine collected November 16 2011 show no monoclonal gammopathy (cancer of the plasma cells). 

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.

Day 70 - Trifusion Hickman Catheter Removal - November 22 2011

Jani and I went early to the University of Colorado Hospital Interventional Radiology this morning. We were delighted when Shawn Egle showed up to visit with us. Shawn was diagnosed with multiple myeloma the month before I was and had her stem cell transplant about 1 month after I did. She is doing great! It is so nice to have someone to go through all of this with.

We requested to talk to the doctor before the procedure - Janette Durham, MD. Dr. Durham told us that my blood clots in my heart were pretty unusual - that they only see this about twice a year. She was very frank with us and told us she didn't know if the blood clots in my heart would be released in to my lung when she removed the Trifusion Hickman Catheter or not. If that did happened, I could expect to wake up intubated with a machine breathing for me or I could die (but, she didn't think that would happen). Dr. Durham spent a lot of time with us and did not seem rushed even though we knew they were behind in the daily schedule as we had waited more than an hour past our appointment time. I liked the doctor and had a lot of trust in her.

Nurse Karlie accessed my Bard Power Port and hung a bag of normal saline after she drew some blood for bleeding and clotting times.

Waiting for the procedure and watching television November 22 2011. I walked back to the procedure room where I was put on a big moving table under a big x-ray machine with a bank of monitors. The nurse, Kristie, put EKG leads on my chest and Mel made sure the machines were lined up. I was given light intravenous conscious sedation and I don't remember anything after they got me set up. Dr. Durham pulled the catheter out - I DIDN'T DIE and so far, I don't have a pulmonary embolism (blood clot in my lung). The clot could still break away and go in to my lung. If that happens, I would know because I would be short of breath and have chest pain. We were instructed to call 911 if this happens. Dr. Durham thinks I should have my Bard Power Port removed too and will consult Dr. Myint regarding this.

I ate a peanut butter and jelly sandwich that Jani brought for me.

They monitored my vital signs for 1 hour, tested me walking for chest pain and/or shortness of breath (I did fine) and then Jani and I were on our way home to Greeley, Colorado. I slept all the way in the back.

I'm to start my Fragmin injections tonight and that's the whole "happily boring" story.

Day 69 - Eve of Trifusion Hickman Catheter Removal - November 21 2011

We are headed to the University of Colorado Hospital (UCH) Interventional Radiology tomorrow morning to have my Trifusion Hickman Catheter removed. So hoping the blood clots in my heart have resolved and the removal goes smoothly. As instructed, I have held my Fragmin blood thinner injection today. I'd be lying if I told you that I was not nervous. They are hoping they do not have to remove my Bard Power Port under the skin on my right chest wall because I will need it for my maintenance chemotherapy for the next 3 years.

Day 68 - jm's Top Ten List -- Why Being Bald is a Good Deal

#10: Never have to search for a comb or hair brush
#9: Less laundry...no second towel needed to dry your hair
#8: Mega $$$ Savings...no hair cuts required
#7: No blow dryer or curling iron necessary
#6: Decreased spending on hair products
#5: Almost any hat looks good
#4: Don't ever have hair on your clothes
#3: Getting ready is lots faster
#2: Never have to pick hair out of the shower drain AND
#1: Never a BAD HAIR DAY

Walked 1.10 miles today.

Day 67 - November 19 2011

My cousin, Laura Dynia, came to visit today. Really enjoyed her visit. Nothing new to report. Go Boise State~

Last 100 Visitors to jm's Adventure with Multiple Myeloma Blog - November 19 2011

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 65 - Trifusion Hickman Catheter Update - November 17 2011

Interventional Radiology at UCH called today and instructed me to hold my Fragmin injection the day before my scheduled Trifusion Hickman Catheter removal scheduled for November 22 2011. They also want me to come NPO (nothing by mouth) in case the removal is "difficult" and they would need to sedate me. Sometimes it is hard for me to be brave - but, I will be!

Went to the movie, J. Edgar Hoover, this afternoon with Sandy Baird. An interesting movie, but it seemed to drag along.

Day 64 - 24-Hour Urine Results - November 16 2011

My 24-hour urine results remain unchanged at less than 6 mg/dL.

Day 64 - Halleluyah, I Think~ November 16 2011

UCH called with my appointment to have my Trifusion Hickman Catheter removed - Tuesday, November 22 2011 - Halleluyah~!  Now, I'll just think POSITIVE about the blood clots (I have 2, one larger and one smaller) in my heart not causing any problems during the catheter removal.

I drove myself to UCH to take my 24-hour urine in and to get my Trifusion Hickman Catheter dressing changed. Afterwards, I stopped to pick up some insurance forms from Amy, the Social Worker. Amy has really been helpful.

I was in and out of UCH in less than 40 minutes - a RECORD~

Day 63 - M-Spike Value Results from November 9 2011 Back - November 15 2011

They repeated my SPEP on November 9 2011. The results came today, November 15 2011. My M-Spike remains at 0.1 (IgG kappa). However, now I have "hypogammaglobulinema" listed on it also. I'm not sure if this is of concern or just part of recovering from stem cell transplantation. The report also lists: Mild elevated alpha-2 fraction (alpha-2 macroglobulin). Again, not sure what that means.

 The M-Spike over time from June 15 2011 to November 9 2011.

I stayed home all day today because I had to do a 24-hour urine test that I will be taking in to UCH tomorrow.

Day 62 - Walking and Hair - November 14 2011

Very windy here in Colorado today, so I decided it was best not to walk outside even with my mask. The leaves and dirt were heavy in the air. However, I did do the grocery shopping by myself and did a lot of slow walking in the store.

My hair continues to get longer...but, I still look bald.

Day 61 - Walkin' and Itchin' - November 13 2011

I walked 1.10 miles this morning. My right arm continues to ITCH. I think I've decided that it has itched since I started the Fragmin injections on November 2nd. I found this on the Fragmin Insert about pruritis (itching) from Fragmin allergy --- however, it seems WEIRD that I would only itch on my right arm at the elbow~

Day 60 - Walking - November 12 2011

I walked with Jani and the dogs (the extra black one belongs to Robbyn's sister) 1.10 miles. Jani and the dogs went on without me so they could walk further and faster.

Day 59 - Walking - November 11 2011

I walked the dogs 1.10 miles this afternoon. I still have the pain in my upper back when I walk -- even slowly. I want this Trifusion Hickman Catheter OUT~ My weight is stable at 145.5 pounds.

Day 58 - Walking - November 10 2011

I went shopping today by myself for a few groceries and some t-shirts. I also went to the bank drive-through. I wore my mask. I'm so afraid of the blood clot in my heart that I walked slowly. I've been complaining of pain in my legs - especially my left leg behind my knee and thigh. At my appointment yesterday, they thought I might even have blood clots in my left leg. However, since Fragmin 12,500 IU is the treatment and I'm already on daily Fragmin injections, they didn't think any diagnostics were needed. Even if I don't have blood clots in my legs, my legs bother me especially at night - enough that I take 1/2 Percocet - sometimes twice during the night.

Day 58 - My Pig Pen Hair - November 10 2011

My hair growth reminds me of Peanut's Pig Pen...sparse and straight...but, not quite as long yet.

Day 58 - Breakfast in Bed - November 10 2011

My dear sister, Jani, greets me EVERY morning since I've been back from my stem cell transplant with breakfast in bed!!!! She has only missed 1 morning and that was because I was NPO (nothing by mouth) for my PET Scan. My breakfast is scrambled eggs with ham and toast with coffee and it arrives at 7:15 AM on the dot ~ I love my sister !!!!

Day 57 - Blood Test for Leukemia and Lymphoma - November 9 2011

My bone marrow biopsy was tested today for leukemia and lymphoma with immunophenotyping and this will have to be explained to me.

Day 57 - Beta-2 Microglobulins - November 9 2011

My Beta-2 Mircroglobulins are within the normal range for the first time since diagnosis.

Day 57 - Immunoglobulins A, G, M - November 9 2011

My immunoglobulins (A, G, and M) are still very low - the reason I have to wear the mask when around the public. Immunoglobulin A is 42 (norm 66-436), Immunoglobulin G is 299 (norm 791-1643), and Immunoglobulin M is less than 25 (norm 43-279).

Day 57 - Liver Enzymes Up - November 9 2011

Fragmin injections can increase your liver enzymes.

My liver enzymes went up for the first time, today, November 9 2011. I've been on Fragmin for 7 days (although I did take only 5,000 IU vs 12,500 IU for 3 of those days).My Alanine Aminotransferase is 109 (norm 0-47) and my Aspartate Aminotransferase is 55 (norm 0-47). According to the Fragmin injection insert (above), the liver enzyme values can increase 3 times normal and still be asymptomatic (without symptoms).



Day 57 - Medications - November 9 2011

The number of medications that I take on a daily basis as of Day 57.  You might remember that on diagnosis back on 24 May 2011 that I was worried about taking ANY pills and now I can take a whole handful at a time~

Plus 12,500 IU injection of Fragmin daily.



Day 57 - PET Scan Results - November 9 2011

Day 57 - NORMAL EVERYTHING - November 9 2011

My blood test results today, November 9 2011, are simply amazing to me. EVERYTHING is NORMAL for the first time since my diagnosis back in May 2011! I am no longer anemic, I have some "fighting" white blood cells, and my platelets (clotting) are normal.

Day 57 - The NEWS - November 9 2011

Jani took me to the University of Colorado Hospital today for my blood draw and appointment with transplant doctor, Han Myint, MD. We were both anxious as we waited in the exam room for my appointment. I wore my lucky Mackay t-shirt today~

 Reading over the list of questions that I have for Dr. Myint.

Then, Dr. Myint came in and I received my bone marrow biopsy of 11/2 results.

I am in Stringent Complete Remission!!!!!!!  No cytogenetics (abnormal DNA) and less than 0.01 plasma cells (anything less than 0.05 plasma cells is considered remission) done with the CD138 stain for myeloma cells.

If I didn't have the blood clot in my heart, Dr. Myint would have started me on maintenance chemotherapy of Velcade (IV) and Revlimid (pills by mouth). AND, if I didn't have a blood clot in my heart, I could have headed home to Mackay, Idaho tomorrow with return visits to UCH every 3 months.

Click on images below to enlarge: