2nd ASCT - Day 111 - September 6 2012

Zolinza effects so far. Last night I almost threw up around 9 PM, but did not. I was careful to sleep more upright. Interestingly, I was not nauseated, I just had esophageal reflux suddenly which is very unusual for me. 


I also noticed that I had my post-shingles pain in my upper back area on the right side. I haven't noticed this for at least a month, so I hope I'm not going to break out in the shingles again. I take my Famciclovir 500 mg every 8 hours using an iPhone app called Pillboxie. I highly recommend Pillboxie to anyone who has to remember to take meds and has an iPhone.










Slept better last night, took a Pepcid in the night, and woke without an appetite, but not nauseated. I think this is good since the dexamethasone 10 mg has had me ravenous and eating every thing in site. I think I gained 8 pounds over a 2 week period, but that may not be true since my clothes seem to fit the same.

I also have increased burning neuropathy which I have experienced as a burning sensation on the bottom of my left foot, radiating up the back of my left leg to my thigh area. I'm sure this  is a Velcade issue, even though I am getting it subcutaneously.

I have good energy today. However, my lack of appetite continues - I eat anyway! Ha

The air quality improved here in Mackay Idaho overnight from the forest fires and Kemmer and I walked the Mine Hill 1.50 miles with ease.

Kemmer looks heavy below, but it's all HAIR~

We went to my niece, Lindsay's Memorial for a visit. Miss you Linds.

April 18 2012

Kemmer and me April 18 2012 in Greeley, Colorado. Not up to walking today, but I did stroll around the backyard.

The lilacs are blooming here in Greeley, Colorado and they smell so nice!

I had a rough night - pain across my chest beneath my breasts that was like a constricting band, but it did not go around to my back. I thought I might be having a heart attack, but Jani checked my blood pressure, pulse ox, and pulse and I they were normal. We decided the pain was related to my esophagus and/or stomach and it would be better if I tried to sleep sitting up. I took Kytril and a 1/2 Percocet and things calmed down. Jani is so good with me when I whirl in to anxiety about something!

April 15 2012

Couldn't eat today, even though I ordered this hearty meal. The broccoli was frozen on delivery.

Around 1 PM, I was NOT feeling too hot - feeling like things might be going north soon.  They gave me a phenergan pill which I barely got down with a sip of water. But, in 30 minutes, it helped.

They gave me a Kytril pill (anti-nausea) tonight because the Zofran they had been giving me gave me an all over my head headache.

VDT-PACE Day 2 Begins at 8:20 PM March 17 2012

RN Breanne hangs my 2nd 24 hour bags of VDT-PACE chemotherapy that run in to my PICC Bard Power line in my left arm which has bruised around the insertion site and continues TENDER.

I'm retaining fluid and my face is puffy. I also have NOTHING going south in my gastrointestinal tract and despite Miralax in juice today, no results. They won't let me take my usual Phillips Tablets (500 mg  of magnesium) because my serum Magnesium is too high. I felt so nauseated and like things might go north (they brought me a bucket) and gave me IV Compazine. The compazine calmed everything down and I slept for several hours. They are going to have to give me a bomb to get my guts going again!

My other issue is the potential of a shingles eruption on my back. I have pain on the right side of my back over my kidney area VERY SIMILAR to my first shingles outbreak in 2009. Yes, I had shingles not quite two years before I was diagnosed with multiple myeloma - obviously, my immune system was warning me way back then. They have increased my famiciclovir to 500 mg three times a day - and hopefully, that will take care of it.

Finally felt well enough to eat a Taco Bell Burrito that Faye Hummel brought me and I had in the UCH refrigerator.  Couldn't eat it all, but what I did eat, it was good.

UCH Breakfast and Visitors - March 17 2012

You have to call Room Service and order what you'd like to have for your meals. Then, the meals show up about 45 minutes to 1 hour later. Here is my breakfast. I was only able to eat the eggs with ham, because the potatoes and the veggie sausage were too heavily seasoned with PEPPER for my tummy.

Soon after eating, it seem all the peristalsis in my gut STOPPED and things wanted to come north. I was given Compazine IV and it helped a lot. However, it made me very sleepy.

Faye Hummel and Juli Richter came to visit at mid-day. They are both a lot of fun.

Jani came later and stayed until nighttime.

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 40 - October 23 2011

Walked 1.82 miles today - about 1/2 mile further than any previous day. My legs are stronger. My stomach is much better, but still a tad raw.

Day 38 - Sinus Infection is Back - October 21 2011

I developed a sinus headache yesterday afternoon and it just won't let up. I contacted Kelly Pacic, RN at the University of Colorado Hospital and asked her if I could start Augmentin (antibiotic) again. She consulted the Nurse Practitioner and they thought it was best for me to start Augmentin again (I already have some on hand). So, hopefully this will clear my sinus headache up.

My stomach is much MUCH better and although I don't want to eat a variety of foods yet - I think I'm on the mend in that department.

I walked Kemmer and Zoe 1.23 miles this afternoon - I was careful to wear sunscreen and my cowboy hat since the sun is clear and bright here in Colorado ... a mile high.

Day 36 - Update October 19 2011

I've had a much better Day 36. My stomach isn't perfect, but it is much better. I walked 1.23 miles with Jani and the dogs this afternoon. Jani wanted me to try a longer distance, but I haven't even been at this distance for a week yet - so, I declined.  Weight steady at 145.

jm and Kemmer October 19 2011

Day 34 - Update October 17 2011

Not much to report today. It was raining and blowing a gale outside, so I didn't think I should go out and walk with Kemmer. My stomach gastritis continues - hopefully it will get better someday.

Day 33 - Update - October 16 2011

Tried experimenting with varying my diet some now that my gastritis is a little better - MISTAKE - made my stomach hurt again - so, for the time being, I'm going to stay with the foods I have been eating like scrambled eggs with ham, toast, hearty soups, wheat thins, white bread, yogurt, canned spinach, bananas, and baked potatoes.

I walked 1.23 miles with Kemmer early this morning when it was only 47 degrees outside. I wore my polartec hat, insulated light weight jacket, and levis which was fine. My legs continue to get stronger. 

Day 32 - Update - October 15 2011

I'm feeling a little better each day as far as my gastritis is concerned. It was another beautiful day here in Greeley, Colorado and I walked Kemmer 1.23 miles.

Day 30 - Update - October 13 2011

My stomach gastritis is some better today after taking the double dose Prilosec (40 mg twice a day vs 20 mg) along with Zantac (150 mg). In fact, I felt like really walking for the first time in a month. I walked Kemmer 1.23 miles at a strolling pace. The weather was perfect, not too hot and not too cold. My legs are stronger, but I still have some old familiar upper back pain when I walk.

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.

Day 28 - Update - October 11 2011

Day 28 - Another day of nausea - this is really getting old and I  am wondering if my stomach will EVER HEAL???

I walked outside in the sunshine with Jani and the dogs for 15 minutes. My legs are getting stronger. I've been walking up and down the stairs at Jani and Robbyn's since I stay in the finished lower level and I think that is helping my leg strength.

Jani will take me to my clinic visit at UCH tomorrow - I hope they have an answer for my nausea!!!!!

Day 27 - Update - October 10 2011

Had a pretty good morning with little nausea. Walked outside twice today for 12-14 minutes.
Tonight, I'm just as nauseated as ever and still bald.

Jani made me tacos tonight - Yummy October 10 2011

Day 26 - Update - October 9 2011

Nausea continues. I still have my Trifusion Hickman Catheter (left chest wall) that I have to flush with heparin solution once a day. I, also, have my Bard Power Port (right chest wall) which requires heparin flush once a month and is due. I can flush the Trifusion catheter myself, but I'll have to get the Bard Power Port done at the clinic.

Day 25 - Update - October 8 2011

Ditto yesterday except I walked 11 minutes twice. Nausea continues, but might be a tad better right after I eat - MAYBE~

Day 24 - Update - October 7 2011

I did do the 10 minute walk last evening. And I walked 10 minutes twice today.

Today, Day 24, is little different than yesterday. This nausea is unrelenting and I can only hope it subsides some time, some day. Yes, I'm whining!

Day 23 - Update - October 6 2011

I'm sleeping pretty well. However, I'm still plagued with constant nausea - nothing seems to help, although I do feel a tad better after I've eaten something. Eating every 2 to 3 hours. Jani is making potato soup today. I broke down and took 1/2 of a Zofran  - that didn't help either.

Jani and I walked the dogs 0.38 miles in 10 minutes. It was windy and chilly, so I look like some kind of alien.

jm walking in Greeley, October 6 2011

I walked around inside the house for 10 consecutive minutes because it was blowing a gale outside. I'm going to try and do that one more time this evening. My legs still feel like rubber.