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.

Better Energy Today - December 9 2012

I had better energy today and was able to do the laundry. Day 13/21 of Revlimid 10 mg. I've been taking my Revlimid at bedtime and that is working out a lot better for me since it make me very sleepy. I'm still taking Augmentin for my sinuses, Day 7/10. The antibiotic is probably contributing to my fatigue too. AND...I continue with my daily Fragmin 15,000 units injections to prevent blood clots.

I took a drive to the Chilly Cemetery some 20 miles north of Mackay, Idaho and it was chilly there.

Our reservoir, the Mackay Dam, is at 55 percent of capacity and hasn't iced over yet for ice fishing.

Doppler Study Left Leg - March 18 2012

Bright and early, Deborah came to do a doppler study of my left leg which has been bothering me for months. She could not find any cysts or blood clots, so I guess I'm just going to have to QUIT worrying about that pain which keeps me awake at night.

Day 93 - Bard Power Port Removal - December 15 2011

Jani and I made it down to UCH early. I was to check in at noon for the 12:30 PM Bard Power Port Removal procedure in Interventional Radiology.


First, we delivered Christmas goodies to Dr. Myint , the Nurses in the BIC, the Oncology Clinic Nurse Practitioners and Hank, the Transplant Nurse Coordinators, Donna and Derek in Scheduling, and the 11th Floor Inpatient Bone Marrow Transplant nurses.


Then, on to Interventional Radiology on the 3rd Floor of the Inpatient Unit. We were taken right back, given the warm blanket and told to wait. And wait we did.

I put EMLA cream (numbing) over the Bard Power Port site because they were going to numb the skin with xylocaine injections before they made the incision to lift the port out of its pocket beneath my skin. That's plastic wrap over the EMLA Cream. You apply the EMLA Cream 1 hour prior to the poking and it works great!

Nurse Practitioner Kendra consulted her attending physician about the blood clot in my heart and reviewed my existing MRI of my Heart, and 2 echocardiograms. I'm considered to be hypercoagulable (makes blood clots easily) and they felt that it was best to have the foreign body (Bard Power Port) removed to allow my body to resolve the blood clot in my heart. I'lll be on Fragmin (blood thinning) injections for at least 3 months. In addition, the chemotherapy pill that I take 14 days out of every 28 days has blood clots as a side effect...all the more reason to have the port removed now.


I was finally taken back for the 12:30 PM procedure at 2 PM.

Nurse Practitioner Kendra did the procedure. As with my Trifusion Hickman Catheter removal, a risk existed that taking the port out might "mobilize" the existing blood clot in my heart, but I didn't experience any problems. A lot of mashing of my chest wall and I'm absolutely SURE I'll be quite sore for the next couple of days after the xylocaine wears off. I was back with Jani in recovery by 3:15 PM.She was just starting to get concerned that it was taking too long.

 

Dressing over the former Bard Power Port site with Tegaderm since I'm allergic to almost every other adhesive. Click twice on the photo above and you can see how much thicker my hair is getting.


Our super nurse, Carolyn, did my vital signs a couple of times along with the discharge teaching (No shower for 48 hours and to call IMMEDIATELY for any shortness of breath or chest pain). Finally, at 3:45 PM, we were on our way back to Greeley in Bart (2006 Honda Pilot).


On our way home, I took a whole Percocet. About 20 minutes after I took the pill, I had a reaction like I was going to FAINT. I was just sitting in the passenger seat of the car doing nothing.  I was sweaty for a minute and then "the spell" quickly passed. While it was happening, I thought, "THIS IS IT - I'M DYING".  I don't know why I thought I could take a whole Percocet when I've only taken 1/2 tablet always before. Scared Jani too!


Now that I'm home, I seem fine - feels like someone punched me in the chest - not that I've ever been punched in the chest~~~~


My spirits are high --- I'm one more BIG STEP closer to being able to go home to Mackay, Idaho on December 27 2011 if the weather across Wyoming cooperates!!!!!

Day 84 - Echocardiogram Repeat on Dec 1 2011 Results compared to November 2 2011 Echocardiogram - December 5 2011

When the blood clot in my heart was discovered via echocardiogram on November 2 2011, it measured 2.2 x 2.0 cm (see report at the bottom of this post).  My repeat echocardiogram on December 1 2011 shows the clot to be reduced in size to 1.5 x 1.3 cm. I continue on daily Fragmin injections (blood thinner) since November 2 2011.
The MRI of my heart showed the clot to be 1.3 x 2.7 cm. Remember, you can click on the reports below once to enlarge them and twice to original photo size.

The next set of echocardiogram results are from November 2 2011 when the blood clot in my heart was first discovered.

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 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 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 57 - Blood Clot in my Heart - November 9 2011

I received all the written reports for my PET Scan (11/2/2011), Echocardiogram (11/2/2011) and MRI of the Heart (11/3/2011).

My PET Scan was negative except for an uptake area over the blood clot in my heart.

My Echocardiogram showed and I quote, "There is a large mass in the right atrium that measures 2.2 x 2.0 cm. There are some smaller echodensities off of this larger mass that are highly mobile. Given the patient's history of catheters (left intrajugular venous line and an implanted Bard Power Port right subclavian central venous port) but we are unable to track the mass into the superior vena cava on this study"...recommendations: further studies with TEE or Cardiac MRI. My Echocardiogram also revealed that 3 or my 4 heart valves (mitral, tricuspid, and pulmonic) have trace regurgitation.

My MRI of the Heart showed that I have a thrombus (blood clot) at the end of my central line in the right atrium measuring 1.3 x 2.7 cm - thought to be a chronic thrombus with a smaller thrombus adjacent to the larger thrombus. 

Evidently, the size of the blood clot was NOT quite large enough to necessitate EMERGENCY OPEN HEART SURGERY. It was thought that I might be a candidate for a cardiac catheterization where they go in through the groin and could snare the blood clot in the heart. However, they said they couldn't do that.

I will continue to take Fragmin 12,500 Units daily for 2 more weeks. Then, I will be go to Interventional Cardiology at UCH and have my Trifusion Hickman Catheter removed under fluoroscopy (moving x-ray).

Unfortunately for me, I have taken the incorrect dose of Fragmin for 3 days this past week. I had some Fragmin left over from my pre-stem cell transplant that was 5,000 units and I was supposed to be taking 12,500 units daily - oops ~

Day 55 - MRI of the Heart Results - November 7 2011

UCH Clinical Nurse Coordinator, Christine Frodella, RN called me this evening to let me know that my MRI of the Heart done on November 3 2011 confirmed that I have a "small clot" in my heart. In reality,it was a large clot nearly filling my right atrium in my heart. She said the Fragmin injections that I am taking should prevent any further clot formation.

I will have to have my blood checked for clotting on Wednesday when I go to my appointment with Dr. Myint. I have one unexplained bruise near my Bard Power Port site in on my right chest wall. My Bard Power Port was placed on June 13 2011, so it is almost 5 months old.

Christine thought it would fine if I walked a mile each day. I'm going to ask for printed copies of my MRI of my Heart, PET Scan, Bone Marrow Biopsy,a nd Echocardiogram results on Wednesday.

Day 52 - November 4 2011

Nothing to report. Didn't get any news on my MRI of the Heart results. Walking around the house and up and down the stairs slowly.

Day 51 - MRI of My Heart - November 3 2011

Jani drove me back to UCH for an MRI of my heart this afternoon. We arrived at noon and I was taken right back. The nurse accessed my Bard Power Port and then I went back to the MRI Room. Technician Mary Frances told me the test would last 1 1/2 hours, but it took 2 hrs. A MRI of the heart was a trying procedure for me. After you get on the moving tube on your back, you CANNOT MOVE at all for the entire procedure - that's 2 hours folks!  They monitor your EKG during the entire procedure too. A cardiologist was there with the technician during the test modifying the test as required by my physiology.

After the first hour, I had cramps in my legs and my right arm went painfully asleep. Plus, I was laying on the site of my bone marrow biopsy done yesterday. I wore headphones so Mary Frances could talk to me during the procedure which was about every minute or so. She would instruct me to take a deep breath, exhale, take another breath and HOLD IT for 20 or 30 seconds while the MRI machine sounded like I was in a metal blasting zone. I was able to do it every time she asked ... a gazillion times and I'm not exaggerating.  

No sleeping during an MRI of the Heart - you need to be totally alert and cooperative~ it thoroughly wore me out! Toward the last 30 minutes, I was automatically injected with contrast dye which smells funny, but not a bad smell. Mary Frances said I might taste the contrast as metallic, but I did not.

I was delighted when the test was over and so was Jani - who thought I must have left without her --- she was in the waiting room so long!

We went over to the cancer clinic scheduling to see if I could see Dr. Myint after the MRI of my heart. He didn't want to see me just yet because he won't have the MRI results for 24-48 hours. A nurse transplant coordinator that I haven't met, Christine, talked to Jani on the phone and relayed this information. Just continue to take the Fragmin injections and don't do anything that stresses my heart.

However, believe me, if that blood clot in my heart was going to move - it would have MOVED during the MRI of the Heart - it was a workout that I hope I never have to have again.

Day 50 - Repeat Echocardiogram Number 3 - November 2 2011

We had to wait quite a while for my echocardiogram which wasn't scheduled until 2:45 PM. A very nice technician named Tracy did my exam.  After she completed the exam, she told me that she wanted to discuss the results with the cardiologist. After awhile, she returned with the cardiologist in tow who told me that I had "moderately large" blood clot in my heart where both my Trifusion Hickman Catheter and Bard Power Port end in my heart.

The doctor described it as 2 cm x 2 cm in size. He said he had consulted Dr. Myint and they wanted me to return to the BIC where I would be given a prescription for Fragmin injections. The cardiologist cautioned me not to exercise and to be cautious when doing steps (go slowly). They also DO NOT want me to have the pulmonary function tests scheduled for tomorrow.

So, back to the BIC we go. They canceled my pulmonary function tests for tomorrow and told me that MRI would be calling me to calling me to schedule an MRI of my heart in the near future. Jani went down to the pharmacy and got my prescriptions which was a long and drawn out deal. When she got back to the BIC, they gave me a Fragmin injection. The Fragmin will not dissolve the blood clot, but will prevent further clot formation. My body will just have to reabsorb the existing clot.

I could have done without this blood clot deal and I hope it resolves~

We finally left UCH at 5:30 PM and drove home to Greeley on dry roads - Colorado is so like that - blizzard one moment and dry the next.

Started 81 mg of enteric coated aspirin tonight June 16 2011

The Revlimid chemotherapy that I will start in July may cause deep vein thrombosis (DVT) or pulmonary embolism (blood clot in the lung) as a side effect.  To help prevent that from occurring, I'll take a blood thinner like aspirin. I have NOT taken aspirin since I was 28 years old and had a bleeding peptic ulcer, so it is scary to even think about putting it in my system. However, I had the EGD (swallow the camera test) and my GI tract looked normal - so, I'm going to give the aspirin a try. If I cannot tolerate aspirin, then I'll have to do heparin injections or coumadin pills.