Vitreous Floater - April 11 2013

Around midnight on April 9th in to April 10th I noticed a rather large blood blob in my right eye. The interior of the moving blob had many many black dots that were all moving - pumping in and out - very strange. I had no vision through the brownish blob. I told the nurses at St. Luke's Hospital in Twin Falls about this weird new eye deal and they consulted Dr. Padavanija who thought it was important enough to refer me to an ophthalmologist  for a consult in light of my low blood values, anti-coagulant therapy, etc. 

Appointment with ophthalmologist, Michael Taylor, MD in Twin Falls, Idaho to be evaluated for this new eye deal in my right eye.

Filling out 1st visit paperwork is always fun~~~ Shirley Olsen went with me from Mackay in case they did something to my eye which made driving home difficult or impossible. I'm so lucky to have such a good friend who was willing to give up a total day, miss work, etc.

They dilated my eyes with yellow drops. I HATE having my eyes dilated, but this time it didn't seem to make me systemically ill feeling like it has in the past. 

Dr. Taylor is pretty sure I have, just a vitreous floater - a consequence of NORMAL AGING - the first time I've ever been happy to hear that I'm aging! He said my brain will get used to it and it won't bother me as much as time progresses - it could even disappear. I'm to return immediately if I notice a "curtain coming down over my vision" or developing flashing lights.

In addition, I was born with physiologic glaucoma  which is not a problem!   However, when my eyes are examined internally, it looks like I have a good case of bilateral glaucoma. When a person really does have glaucoma, the pressures in the eyes are elevated. My pressures have always been normal. Today, the pressures in my eyes were just a tad above normal, so, Dr. Taylor wanted to do additional tests to assure himself that I just had physiologic glaucoma and not developing glaucoma. The additional picture tests were normal, so I continue to have normal (if there is such a thing) physiologic glaucoma. Dr. Taylor wants me to come back in 4 weeks to have the pressures checked again for sure.

2nd Opinion - Mayo Clinic Scottsdale, Arizona - November 20 2012

Jani and I arrived early at the Mayo Clinic Scottsdale Arizona for my 1:40 PM appointment with Rafael Fonseca, MD, Chair, Department of Medicine, Consultant , Hematology/Oncology.

We walked around a bit and checked in on the 3rd floor. We didn't have to wait long before they took us back for vital signs, weight and height. Then, they put us in an exam room like we have never seen before - carpet and a sofa!

Rafael Fonseca came in moments later and greeted us warmly. He spent just over an hour with us and was very responsive to our questions. He had reviewed my chart from the University of Colorado Hospital and was familiar with me "on paper".

He said he was in agreement with all of the prior treatments I've had, except maybe the 2 cycles of vorinostat (Zolinza). In short, he felt that my treatments since diagnosis had been right out of the 2012 multiple myeloma care guide (if there were such a thing).

I will always have the 4:14 and 1q21 cytogenetics and it is just a matter of trying to control the quantity in my bone marrow. 

My current treatment with carfilzomib (Kyprolis) with Revlimid and Dex is appropriate for now. He thinks I should increase the carfilzomib dosage in the 2nd Cycle to 27 metered square from 20 as planned on 27 Nov 2012 at St. Luke's Hospital MSTI in Twin Falls, Idaho.

He would like to repeat a bone marrow biopsy after 2 cycles to see if it is working. He had them draw an SPEP on me today, but my blood isn't as reflective as my bone marrow which I already knew. They use conscious sedation and OnControl driver for bone marrow biopsies here (wish it wasn't 2 flights and 12 hours away)!

He is NOT concerned with my creatinine and GRF (kidney function blood tests) and does not think I have a problem in that arena. I can take Lasix as needed.

He sees no reason not to get an implanted intravenous port even with my prior atrial thrombus history.

He also thinks I should get my partially done root canal fixed as soon as possible even if my platelets are low, so I can get back on Aredia.

Another chemotherapy agent that might work if the carfilzomib is not working would be
cytoxan in pill form once a week with the intravenous carfilzomib.

It would be important to support me with blood and platelet transfusions as necessary and to not worry about that.

Clinical trials are not really for me since I would have to relocate and I am not willing to do that.

Pomalidomide may be out in February 2013 and Dr. Foncesa has had good success with it in clinical trials here at the Mayo Clinic Scottsdale.

Also melphalan in pill form could be considered.

He does not think that an allo stem cell transplant (one from a matched donor) would be helpful and would be too dangerous for me.

Overall, it was an excellent and informative meeting with Dr. Foncesa who said he was willing to follow me, but I didn't need to come back to the Mayo Clinic Scottsdale for the tests and treatments unless I wanted to - I'd always be welcome to come back.

2nd Opinion Scheduling - October 31 2012

I had a call from the secretary at the Mayo Clinic Scottsdale Arizona - Hematology/Oncology today. She wants to schedule my 2nd Opinion appointment with Dr. Rafael Foncesa who works with abnormal cytogenetics and relapsed multiple myeloma. I'll need to talk to Jani to help set the dates and travel plans since she will go with me.

• Clinical significance of chromosomal abnormalities in myeloma. Dr. Fonseca is studying the clinical, biologic and prognostic implications of specific chromosomal and genetic abnormalities for patients with myeloma. Ultimately, Dr. Fonseca and his colleagues believe that the accurate knowledge of the abnormalities underlying myeloma will allow for better management and treatment of patients. For instance, they have described the negative impact on prognosis of some genetic aberrations and better outcome with others.
  Further, Dr. Fonseca's lab has shown different pathology and clinical features of myeloma based on this genetic characterization. His lab was the first to show the clinical implications of the high-risk genetic translocations, including the t(4;14) and t(14;16). This information is now included in what the myeloma community calls high-risk myeloma. Many medical centers do not proceed to autologous stem cell transplants for patients with high-risk myeloma. Dr. Fonseca's studies have been converted into a clinical test available from Mayo Medical Laboratories. His lab was the first, in conjunction with Leif Bergsagel, M.D., to show the genetic basis of NF-kB upregulation in myeloma.

I faxed my allergy list and current medication list to the pharmacy in the Hematology/Oncology Department, Mayo Clinic Scottsdale this afternoon.

2nd ASCT - Day 131 - September 26 2012

Well, I gave 100 mg of Neurontin (gabapentin) a try at bedtime last night. It worked great and reduced my neuropathy burning in my left foot and leg by half. So, that means I went from 6 on the 1-10 scale to 3. I was able to sleep, but still woke every 2 hours. Didn't feel hung over this morning and I think I'll be able to take Neurontin at least 100 mg at night.

My transplant onoclogist, Han Myint, MD at the University of Colorado Hospital has retired his position effective September 13  2012 (I was notified via certified letter). He has been replaced by Clay Smith, MD from the University of Pittsburgh. 

I have my follow-up UCH appointment with Dr. Clay Smith on 15 October 2012. Here is link to Dr. Clay Smith's Vita http://www.cudoctors.com/find-a-doctor/profile/?providerID=4647 

I wrote Dr. Clay Smith a letter of introduction and sent it snail mail (U.S. Postal Service):

18 September 2012

Clay Smith, MD

UCH

Re:      Judy Malkiewicz (BD 12-08-1950)

Hi Dr. Smith, Just a letter of introduction.

My name is Judy Malkiewicz and at the age of 60, I was diagnosed with High Risk Monocolonal IgG Kappa Multiple Myeloma on May 24, 2011 after a routine physical exam blood test revealing anemia with no bone lesions or kidney involvment. I had 80 percent neoplastic plasma cells with cytogenetic 4:14 and deletion of 13 changes in my bone marrow; M-Spike of 3.0. I started induction chemotherapy of IV Velcade, IV Dexamethasone, and PO Revlimid on June 13 2011 and did 3 ½ cycles. I was admitted to the University of Colorado Hospital (UCH) for a four day course of VDT-PACE (Velcade IV, Dexamethasone IV, Thalidomide P, Cisplatin (P) IV, Adriamycin IV, Cytoxan IV, and Etopside IV) as my cytogenetic profile changed to include 1q21 with good response.

Harvested my stem cells and had an autologous stem cell transplant on 13 September 2011. My bone marrow 50 days after transplant was deemed in Stringent Complete Remission on 2 November 2011; M-Spike of 0.1.

Complication: As a result of my Trifusion Hickman Catheter and implanted port, I developed blood clots in the right atrium of my heart. The Trifusion Catheter and Bard Power Port were removed and I continued Fragmin for 9 months when the clot was thought be resolved 2 Aug 2012.

I went on Maintenance Chemotherapy of Velcade/Dex/Revlimid and Zometa started 1 December 2011 at home in rural Idaho. Unfortunately, my M-spike increased to 0.59 on 27 Feb 2012 and I returned to UCH in Colorado.

Relapse confirmed with Bone Marrow Biopsy with greater than 50% plasma cells on 9 Mar 2012 with continued 4:14 and 1q21 cytogenetic changes. Admitted UCH for PICC Line Placement and received 2 cycles of VDT-PACE 16-20 March 2012 and 13-17 April 2012.

Bone Marrow Biopsy on 3 May 2012 reveals 1 percent plasma cells with 1q21 (3.5 percent) and 4:14 (0.3 percent) cytogenetic changes.

Admitted UCH for 2nd Autologous Stem Cell Transplant 11 May 2012 with 1 week BEAM Chemotherapy prior. Melphalan given 16 May 2012 and my 2^nd ASCT stem cells were given to me on 18 May 2012. Returned home to Idaho on Day 28.

2nd ASCT Follow-up on Day 55 at UCH, 12 July 2012, showed M-Spike of less than 0.1 and bone marrow biopsy shows persistent abnormal cytogenetics 4:14 and 1q21.

Started continuing chemotherapy of Velcade and Dex 20 Aug 2012 and Vorinostat (Zolinza) 400 mg 14 days on 14 days off added 4 Sept 2012.

My Day 152 Post 2^nd ASCT follow-up appointment is with you on 17 October 2012. I look forward to meeting you and hope you have a high-risk plan for me because I have at least 30 mountain lake hikes right in my back yard that I want to visit at the TOP OF IDAHO~ The BEST place in the world to live UNLESS you need specialty medical care~

Sincerely,

 Judy Malkiewicz, Mackay, Idaho 83251

I am anxious to meet Dr. Clay Smith and hopefully we'll know if the Zolinza (vorinostat) is working to hold my M-Spike down by the time of the October 2012 appointment.

I walked home 0.71 miles with Kemmer after dropping Jonah (1999 Passport) off for a brake check.

I wore my N-95 mask because the air quality is still not good from the forest first north of Mackay. We've had smoke in Mackay most days since lightning started the Halstead and Mustang Complex Fires on 27 July 2012 and 30 July 2012. We have never had a summer like this and I HATE IT!

2nd ASCT - Day 108 - September 4 2012

Drove to St. Luke's Hospital MSTI in Twin Falls this morning. Got there early and stopped at Sportman's Warehouse which is located just on the edge of the canyon with a great view of the Twin Falls Bridge that I have to cross over to get to Twin Falls.

Twin Falls Perrine Bridge over the Snake River today September 4 2012. Double click to full-size.

 RN Kenadi, me and my oncologist, Dr. Padavanija. September 4 2012

Had a good visit with Dr. Padavanija. She thinks I should continue Augmentin (antibiotic for one more week to make sure the root canal is totally bacteria free). I was scheduled to get Aredia (bone building medication) this week, but Dr. Padavanija thinks I should forego Aredia for this entire month in light of the root canal. So, I  only got subcutaneous Velcade today in my left arm. I was in and out of the Infusion Area in just minutes since I didn't get the 3 hour Aredia intravenous drip. I took my Zolinza 400 mg (four 100mg capsules) while I waited for the Velcade along with 10 mg of dex. I ate a peanut butter and jelly sandwich.

My blood values are good this afternoon. WBC normal at 4.7 (norms 4.5-11); hemoglobin 13.5 (norms12-15); and platelets 258 (norms140-440). They also drew a LDH and Beta2 Microglobuins along with my SPEP (includes the M-Spike) and free lights. I also gave them a urine sample.  I won't get those results until the end of the week via fax or during my Friday Velcade administration.

My comprehensive metabolic panel has a slightly abnormally high Creatinine which is NOT good - a measure of kidney function. I've been taking a lot of Advil for the root canal and I'm going to stop that now. However, my BUN is normal (another kidney function measure) - so, I'm probably alright.

Stopped at Taco Bell - yum.

Back home in Mackay, Idaho located in the smokey Big Lost River Valley by 2:45 PM. The Halstead Fire has grown to 135,779 acres and only 7 percent contained. Our air is just THICK with fire smoke - so, no walk for Kemmer and I. Can't even see the Mine Hill and it is less than 1 mile away. The sun was a bright orange, but not in my photo.

2nd ASCT - Day 32 - June 19 2012

Jani drove me to Twin Falls, Idaho to the Magic Valley St. Luke's Hospital Mountain States Tumor Institute (MSTI) for my 1st appointment with my new oncologist, Phatama Padavanija, MD. Twin Falls is 135 miles from Mackay, but an easy drive with little traffic - IN FACT, Jani said we drove 72 miles before we even saw another car traveling in our direction! 


MSTI is a brand new facility having opened just about a year ago.

Dr. Phatama Padavanija, MD aka Dr. P spent a lot of time with Jani and I. UCH (University of Colorado Hospital) had sent her a pile of my records over an inch high. Dr. P seems very in tune with UCH's requests for my care and very willing to share the results with UCH and ME! MSTI does not have a system for sharing lab values with patients, but said they could FAX them to me. I had to have my labs drawn from my arm since I have no central line now, but the lab technician was EXCELLENT and had no trouble getting my blood on the FIRST POKE!


They drew my SPEP (with M-Spike), Immunoglobulins, and Free Light Chains - these tests must be sent to St. Luke's in Boise and I won't have the results for several days.


My CBC continues GREAT. My white blood cell count normal at 4.5 (norms at MSTI 4.5-11); platelets normal at 298 (MSTI norms 140-440); and hemoglobin normal at 13.2 (MSTI norms 12-15). So, I couldn't be happier about this!

My comprehensive metabolic panel had a couple of issues. My creatinine which has always been normal was high today at 1.13 (norms 0.52-1.04). This is a reflection of ones kidney function and mine may have been abnormal because I didn't drink enough today with all the traveling. My phosphorus was high at 6.0 (norms 2.5-4.5) and I don't know why except I ate several TUMS before the blood draw.

My liver enzyme tests were also too high - AST 41 (norms 14-36) and ALT 64 (norms 9-52). I'm going to work on getting better hydrated. My stomach continues to bother me, but eating helps. I'm going to strive to eat a small portion of protein every 3 hours. I didn't have a sinus headache today.

 The bathroom sinks at MSTI are so tiny....

I slept most of the way home to Mackay from Twin Falls in the back of Bart while Jani drove. We didn't get home until around 7:45 PM - a VERY LONG DAY.

2nd ASCT - Day 5 - BAD NIGHT AT BLACK ROCK - May 24 2012

I had a rough night May 23rd into May 24 2012 (Day + 5 to +6). I woke about 1 AM with a pressing left sided chest pain. Changing my position or taking deep breaths did not alter the pain. My RN Sherry called the "doctor on call", Dr. Peterson, and he came to see me. They did a STAT EKG and it was normal. Dr. Peterson seemed to think the pain was referred from the mucocitis that I have going on in my entire gastrointestinal track.

I didn't get any sleep all night.

This morning, Dr. Gutman came to see me and he told me that the mucositis can cause pain like I was having and not to worry. So, I'm through worrying about that.

Cardiology Consult for Right Atrial Thrombus - March 23 2012

Jan Martin drove me to UCH for my Cardiology Consult with Eugene Wolfel, MD, Cardiology at UCH. Short history: On Day 40 after my 13 September 2011 autologous stem cell transplant, I had an echocardiogram where a large right atrial thrombus (blood clot) was discovered in my heart. At the time, I had both a Trifusion Hickman catheter in my left chest and a Bard Power Port in my right chest. The following day, 3 November 2011, I had an MRI of my Heart which confirmed the right atrial thrombus. I was put on daily Fragmin injections 12,500 units and had both the Trifusion Hickman catheter and the Bard Power Port Removed.

I have been followed with monthly echocardiograms and the right atrial thrombus has decreased some in size, but PERSISTS. 

Concern now as I had a PICC Line placed on 16 March 2012 for my VDT-PACE treatments and it terminates at the right atrium of my heart. Hence, the consult to Dr. Wolfel at UCH.

Jan and I waited for our visit, but not too long.

Dr. Wolfel came in and was well aware of my neutropenic (low white blood cell count) state. He told me that he works with heart transplant patients. Dr. Wolfel was especially kind and was genuinely concerned for my well-being. 

I shared with him my history and I had copies of all my cardiac tests which was a good thing since they did not have a copy of my MRI of the Heart Results.

Dr. Wolfel examined me and listened carefully to my heart. I have a slight systolic murmur.

He wants me to get another echocardiogram and then he will evaluate if I can have pulmonary function tests (part of the pre-autologous stem cell transplant authorization process). I am not a candidate for a trans-esophageal echocardiogram because of my low white count and MRI of the Heart is LONG (2 hours) test that was very hard on me the first time.

I need to continue on Fragmin even though my platelets are low because I still have the potential of clotting even with almost no platelets. He had me sign a release of information so he could get my pre-transplant echocardiograms from Poudre Valley Hospital in Ft. Collins for a baseline done 23 June 2011 and 9 August 2011.

All in all, it was a very good appointment and I trust that Dr. Wolfel will have my best interests at heart.

Okay...the Skinny On My Heart - January 19 2012

The cardiologist's office called yesterday and made an appointment for me at 2 PM today with Patrick Gorman, MD in Idaho Falls, Idaho.


Woke this morning to about 1 inch of new snow.

So, I decided to leave a tad early for my 100 mile drive across the high country desert to Idaho Falls. Gratefully, the snow covered road turned dry just below Mackay. Once out of the Big Lost River Valley, the wind was blowing a GALE!

I had to wait more than 2 hours for Dr. Gorman because he had been called to an emergency at the hospital. 

When, Dr. Gorman got back to the office he spent well over an hour with me!

Okay...now the skinny on my heart. Dr. Gorman said I am NOT A TICKING TIME BOMB! The blood clot in the right atrium of my heart is most probably NOT going to MOVE - if it were to move - it would have already moved. Although the echocardiogram reveals that the blood clot is "Mobile", it is tethered too. If the blood clot were to detach and go to my lung, it is "marble sized" and would not cause that much damage - but, again Dr. Gorman stressed that the clot was not going anywhere. I may have this blood clot forever.

Most importantly, I DO NOT NEED TO LIMIT MY ACTIVITY in any way. I can walk, hike, and even shovel snow!

As for the right sided chest pain that had me in the emergency room on January 17 2012, Dr. Gorman said that might have been a very small clot from an IV stick that went to my right lung and caused the pain - even though I had a negative (normal) CT Pulmonary Angiogram. 

I told Dr. Gorman that the right sided chest pain radiating to my neck continued until I took 8 mg of dexamethasone by mouth January 18 2012 (I had some from my pre-stem cell transplant). So, I now have a gut ache, but the pain in my chest, although not gone, is much better.

I told Dr. Gorman that the pain might have been from the Zometa that I received on January 16 2012. I've only had Zometa 2 times prior and both of those times, I also received 20 to 40 mg of IV Dex with it. Both of the prior times, I ached all over for a couple of days after, but never a pain like I had after this last dose.

Dr. Gorman felt like the 12,500 mg Fragmin was adequate to continue on for at least 6 months. After 6 months, he will take me off the Fragmin and see how I do. I'll have to continue some blood thinner even after the Fragmin since I'll be on Revlimid which can cause blood clots.

Dr. Gorman would like to follow my blood clot with echocardiograms every month - so, I'll get my next one on February 5 2012.

We discussed the need for intravenous access down the road if my veins don't hold up. He thought a pic-line that terminated above the heart and not in the heart would be the best option for me....but, I wondered to myself if they have buried port that would terminate above the heart...less chance of infection.

I left Idaho Falls on a real HIGH - I am so relieved!

Day 16 - Dr. Han Myint Appointment - September 29 2011

Jan Martin drove me to my first out-patient appointment since the Stem Cell Transplant with Dr. Han Myint on September 29 2011. My appointment was scheduled for 3 PM and they actually had us in an exam room right at 3 PM.

However, we sat and sat in the exam room for more than hour before Nurse Practitioner Denise came and showed me the lab work results from this morning and asked me a few questions. Denise noted my serum protein and albumin levels and was impressed that Jani had maintained my diet so well since discharge - making sure I was eating adequate levels of protein each day despite my continued nausea. If you look at the values over time chart below, you can see, I never ate enough protein while I was hospitalized with the Protein value ranging between 4.8 and 5.1. Now 2 days post hospital discharge, my protein level still is not in the normal range of 6.4 to 8.3, but much closer at 6.2.

Around 4:30 PM, Dr. Myint came in and said I was doing fine. He decided to give me a Neupogen injection to stimulate my new bone marrow into action since my white blood cell count had dropped from 2.8 on Day 14 to 1.3 on Day 16.

I'm scheduled for a bone marrow biopsy on November 2 2011, just prior to my Day 60 when the decision will be made on whether I will require a tandem (2nd) stem cell transplant. If that bone marrow biopsy shows any abnormal cytogenetic (DNA changes), I will need the tandem transplant. If the cytogenetics are normal and I'm in the top 3 categories of remission, then I would not require the tandem stem cell transplant. If I need the tandem transplant, it would be done right after all of the bone marrow biopsy results are done and finalized. My insurance company, Anthem, has already approved the tandem stem cell transplant.

We were still waiting for the neupogen injection when the nurse poked her head in the room and said they were waiting for insurance approval. Neupogen costs about $250 per one 300 g dose. Not long after, an obviously pregnant nurse came in the room with the neupogen and I asked her if there was a another nurse who could give the injection. The nurse looked so hurt and said, "Yes, there is." I quickly told the pregnant nurse that I had shingles and then she understood. The 2nd nurse came and gave me the injection and I took a Claritin tablet that I brought with me.

Now 5:00 PM, we went downstairs to schedule future appointments. Jan Martin waited at the desk with the scheduler and I went through a door to the Apheresis Department which has temporarily moved to the 1st Floor while the new space is being remodeled. Jessica Jones from Apheresis was there and we had a good visit.

With appointments in hand by 5:35 PM, Jan Martin drove us back to The Timbers. I told Jan that if I had to wait all afternoon by myself at the University of Colorado Hospital Outpatient Cancer Clinic - it would have been miserable - but visiting with Jan was wonderful and the 2 1/2 hour appointment didn't seem that LONG~

I collapsed into the bed for a 2 1/2 hour nap. Jan Martin made me mashed potatoes, fried chicken, and canned spinach for dinner and I ate it all - so yummy and loaded with protein.

Day 7 Evening Update September 20 2011

Blood Counts  4 PM September 20 2011 continue to drop. White blood cells at 0.1, platelets at 46 and hemoglobin at 8.5. They will give me platelets if mine drop below 20 and a blood transfusion if my Hemoglobin falls below 8.

The Infectious Disease doctor came to see me again today. She said we can increase the acyclovir dose for the shingles from 10 mg to 15 mg, but she wants to talk to Dr. Myint first. It is amazing to me how such non-descript lesions can cause so much PAIN.

Faye Hummel came at 3 PM and spent all afternoon and most of the evening with me. We didn't talk about much, but it as nice to have her here with me. She brought me an organically grown banana that the nurses let her wash and peel for me - I was not allowed to touch the peeling. It tastes good.

Day 5 - Visit from Infectious Diseases - September 11 2011

Since I have shingles breaking through yet again, the doctor and her student from Infectious Disease wanted to get my entire varicella (chickenpox - shingles) history before they decided on any long term treatment. For those of you who have not had the shingles - count your lucky stars each and EVERY day. Shingles are quite painful and for me, can be controlled with Percocet to some degree. Amie Meditz, MD, from the UCH Division of Infectious Diseases and her student, Fellow Marci worked several hours on my issues this afternoon.

Dr. Amie Meditz and Fellow Marci

They had me detail all of the steroids I had received since my multiple myeloma diagnosis and all the calendars that I've kept really helped in that history taking department. I also showed the photos of my first shingles breakout August 9 2009 (before my multiple myeloma diagnosis).

Dr. Meditz thinks my really upset stomach from the melphalan has inhibited my body's ability to absorb the oral acyclovir and/or Valtrex I had been receiving. Hence, she wants to treat me with IV Acyclovir for at least week. She feels like the shingle lesions I have on my left thorax below my breast will quickly dry up. Once that happens, I won't have to be in isolation with the yellow gown rule for visitors and staff and confined to my hospital room only.

Nurse Practitioner Karley and Dr. Pollyea Visits August 27 2001

Both Dr. Dan Pollyea and Nurse Practitioner Karley came to see me early this morning on a Saturday which surprised me. Both offered that I might want to stay through the night  tonight and not discharge when the VDT-PACE chemo finishes running at 9 PM or so. So, they are switching me from IV anti-nausea drugs to oral pills today to see if that controls the nausea adequately enough. If not, I might have to stay another night to adjust to the pills. However, I'm feeling pretty set on getting out of Dodge tonight!

Nurse Practitioner Karley went over my long list of discharge medications and told me that I need to come to the BIC (blood lab) on Monday to have my blood checked again in case I might need a blood transfusion or platelet transfusion from the effects of the VDT-PACE I've gotten over the last 4 days.

I tried to get up and take a shower, but found myself dizzy for the first time ever - glad to lie back down. I drank a whole bottle of water and ate some oatmeal with a banana and I think I'm feeling better now. Aide, Kirby found a shower chair and put it in the shower for me when I do feel like getting back up for the shower.

Advanced Care Partner (an aide who has expanded duties because he/she is enrolled in nursing school and has completed their medical-surgical rotation) Kirby is going to take the Trifusion Hickman Catheter dressing that I think I'm allergic to off this morning and replace it with just a Tegaderm. I don't think I have  huge allergic reaction, but I'm constantly aware of an irritation and the Hickman, so, I think it would just be better to replace it with the Tegaderm that I know doesn't bother me.

Advanced Care Partner Kirby August 27 2011

Physician and Nurse visits August 26 2011

Dr. Dan Pollyea came in for a visit this morning. He always asks such good questions and waits for my answers. He is pleased with how the nurses are controlling my nausea. He told me Dr. Han Myint and Dana Godec, RN would be up to see me this morning too.

A little bit later, Dr. Myint and Dana Godec, RN arrived.

Transplant Coordinator, Dana Godec, RN and Transplant Unit Director, Han Myint, MD        August 26 2011

I am scheduled for my next bone marrow on Thursday, September 1 2011 and Dr. Myint is sure the results will be back prior to my next scheduled stem cell harvest date of September 6 2011. If the bone marrow results are such that a second round of VDT-PACE would be necessary, Dr. Myint would like to do that prior to the stem cell harvest. I'm in full agreement even though this will extend my time here and away from home in Mackay, Idaho.

However, Dr. Myint thinks my bone marrow on September 1 2011 will be much improved because I am getting some many "NEW TO ME" chemotherapy agents with the VDT-PACE. The only chemo agents of those that I have received are Velcade and Decadron - all the rest are new. Dr. Myint likened that to hitting the cancer from many angles.

Dr. Myint reminded me that stem cell transplant will not cure me and that I will need chemotherapy maintenance after the transplant or tandem transplant if necessary. The tandem transplant would be done 60 days after the first transplant if my bone marrow was not showing the best response after the first transplant.

I reminded him that I live in Idaho and would prefer to get my maintenance chemotherapy after the transplant(s) in Idaho - preferably in Idaho Falls or Blackfoot and not Boise. He said he knows several Idaho oncologists and would work with me when the time arrives. Dr. Myint would remain my primary oncologist and would direct my care via the Idaho oncologists. I will still need to return to Colorado for followup visits with Dr. Myint.