One Year Post SCT Fast Approaching

December 4 will be one year post stem cell transplant and ll seems to be going well. My hair returned within 3 months, energy level is slowly returning and the M-spike remains very low. Emailed my hematologist at Mayo asking if I should come back at one year and she said it wasn’t necessary – good news, stay at home and work with the oncologist.

I have been on a maintenance program of 10 mg Rev since April and will be adding some Dex in about 2 weeks.

Life has returned to normal for the most part, i returnedto umpiring high school girls fastpitch and adult slowpitch softbll, got in a little kayaking and fishing and finished helping my son install an engine and transmission in his 84 Fiero. The gararage is still a cluttered mess – tht was a summer project and it is getting ready to snow. Something has to give because there is no room in the front garge for the snowblower and tractor!

I returned to work 1 month aft the SCT, working 4 hrs per day for the first month and the full-time since then.

Over the course of the year I have learned tht severl friends from the GOL House were nto quite so lucky and have either passed way or are having a difficult time – my prayers go out to them and theri families. This is not an easy row to hoe.

Thanks to everyone for their support and well wishes! Fight the fight!

D3 Post Transplant!!

Today, December 07, 2009, is day three after stem cell transplant. I go from the transplant house to Methodist’s Hospital every morning at 1000 CST for blood work and checking the Hickman Catheter. On Day 1 (Saturday), I went over to the hospital and had the bllod work done and back home by about noon. All was going weel, no nausea fromt he melphan from the preveious couple of days, no side effects/uncomfortableness from the transplant etc. About 1500 R on Saturday I got a call from the hospital, I needed 2 units of blood for low hemoglobin. No problem, mom and I walked on over and spent 5 hours getting a blood transfusion, then walked back to the transplant house.

Day 2, Sunday, was rather uneventful. Went to the hospital, bloodwook, checked the Hickman, etc. Walked ome had lunch, etc, did a litle computer work. Missed the Vikings first touchdown but did see several of the Cardinal’s TDs!

Day 3, Monday, started out as usual. We caught the shuttle too the hospital and went to get the blood work done. Trouble is this time the lines were plugged, seems the catheter lines had clotted?????? I really don’t like the idea of blood clots but the nurse practicioner (sp) rea-assured me it wasn’t what I thought. the BMT nurse put some solvent in lumens and let it set for a while and then is started working. Blood draws as normal. The BMT nurse did change the dresssing on the Hickman for us so that was nice, Mom got to see it done again for when she does it! Day 3 was not done yet, we had to get some more meds before we left the hospital, Norvasc for blood pressue so we picked that up on the way out, got my glasses fixed (the plastic part that goes over the left ear fell off somewhere Saturday) and went and ate lunch. We got back to the room at about 1400 and the phone rang at 1430, that I had to come back to the hospital to pick up some potassium supplements. another trip back to the pharmacy and more scripts!

So today, I added 3 more pills to take to my daily routine, removed 1 other, have a whole rainbow of fruity flavors to take……!

Mom started charting my calorie and protein intake for the dietician, I am to target 1900 calories and 75 mg of protein per day. Well sunday was a good day, the dietician figured it was bout 4000 calries and 300 g of protein. I thought I may come up alittle short! Today should be OK to, we had a big breakfast and then went to the Pannekoeken for a lunch of country fried steak.

Day 4 post transplant is tomorrow, the BMT nurse said my counts will continue to drop for a couple of more days until engraftment and then start to pick back up!

Nice to report no nausea, vomitting, diarrehia…. and my energy level seems to be OK. Mom has been a big help, we go for a couple of walks a day and she takes care of all my meds and gets my meals ready for me. The BMT nurse said that the caregiver is very important and boy was she right!

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H1N1 and Stem Cell Transplant (subtitle – A Journal Article In the Making)

I had the cytoxan “pulse” on Oct 30 and 31, the cytoxan chemo was designed to push back the myeloma before the stem cell collection. Starting on Nov 1 i was given a daily injection of growth factor (neupogen) to mobilize the stem cells. On Nov 3 (Tuesday) my neutrophils were at 0.0, i had not immune system. The once daily injections of growth factor continued for 10 more days. The stem cell collection started on Tuesday Nov 10 and ended on Nov 11. I collected enough stem cells for over two transplants, i collected 10.8 million (~4.5 million on day one and about 5.3 million on day two).

I had another CT scan on Wednesday the 11th and met with the pulmonologist on thursday to review the CT scan. the spots noticed on an earlier PET scan were gone but there was a “remnant/artifact” left in my right lung. Well, the next morning (Friday the 13th) I had a bronchoscopy and they did a flush. At about 1600 Friday afternoon the transplant coordinator nurse called and said I had H1N1. I was prescribed tamiflu and moved out of the transplant house and put up in a local hotel. I was treated with tamiflu 2x per day for five days. My hematolgist moved my next chemo date back to Nov 30 with the stem cell infusion to be shortly there after!

I guess I was a new one at Mayo, this is the first time they had a stem cell transplant candidate contract H1N1 between collection and prior to infusion. Go figure! The plan, in conjunction with my hematologist, the infectious control doctors, the transplant nurse coordinator and me led to the plan of treating me with tamilfu once again when the stem cells are re-infused. No one is sure as to when I contracted the H1N1. So we are adding something a little new to the procedure – tamiflu following the melphan and stem cell re-infusion. why do I get a feeling my life is a journal article just waiting to happen!

My hair finally started falling out from the cytoxan, feels kind of wierd but at least I will be used to it before the melphan!

Other than having chemo and daily neupogen shots (bad karma), levaquil and then tamiflu, all things seem to be going OK!

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Stem Cell Harvest – Day 1

Today was the start of the stem cell harvest process, all seemed to go well. My appointment was for 0800 CST but did not get in until 0820 and was off the machine by 1400. Mom was with me most of the day, I did get a nap in for about an hour or so. I had to lay very still because there was a steel needle in my left arm and the return line in my right arm.

Stem Cell Collection 11/10/09The BMT Nurse called at about 1600 and told me that I collected ~5 million stem cells, well on my way to a goal of 8 Million. My next appointment is Wednesday morning at 0700 and following the collection I have a CT scan at 1300.

Tracy is on her way down tonight, she had classes until 1600 at Nursing School then hit the road. She will more than likely stay at her sister’s tonight and finder her way to Mayo in the AM. The gils came with and Sumner stayed home, he is going deer hunting this weekend!

There was a pot luck at the Gift of Life House tonight sponsored by the Dan Abraham Center, that was a nice break! Tried to do a little work realted stuff tonight but just got some documents downloaded and saved. Had trouble finding earlier dwonloads, this is my first experience with Citrix and i had to search around to see where I saved some word.docs – thought they were on my C drive, not!

Funny experience when I went in for my bone marrow biopsy earlier last week. I went into the prep room and there was a person watching what the nurses were doing and she had a clipboard! QA! I was part of a QA inspection! At least I knew the process was being followed! We exchanged a couple of QA pleasantries before she left and then I was put under.

All Primed Up With Nowhere To Go!

I finally got the call from the BMT Nurse today, my CD34 counts were finally high enough to begin harvesting tomorrow! So far I have been pulsed, purged and now primed. I added the purged and primed as my own descriptors.

The pusing was by the use of cytoxan to help drive down the m-protiens and then the “priming” began with daily injections of neupogen. My past experienc with neupogen was not very nice, bad, bad pain in the sternum and lower back. I thought I was out of the woods with this round of shots – 8 days and no pain – until tonight! My sternum feels like 17 – 5 yearolds in the bouncy ride at the fair – all jumping around and hitting the sides. But in this case the sides are my bones and the kids are on concentrated Mt Dew with a high fructose chaser.

The collection/harvesting should be about 5 hours hooked up to the machine, I do not have a port or catheter in, the nurse thought I had very ‘nice” viens.

It may take 2-5 days to harvest enough stem celles for two tranplants but the way it feels, they may just hop right out and into the bucket.

Mom and I have been getting along fine, we walk to the clinic in the morning and then back and back if I have another appointment. We take a couple of short walks throughout the day. Tonight the Hmong Baptist Chruch Youth Group brought a bunch of cookies and i hammered home a few of theose and 4 scotcheroos from Tracy’s sister Mandi. Combine that with an Boost and I got my caloric intake for the day in about 5 minutes – right before bedtime.

Well, I am off to bed, I am going to watch Trinity Is My Name – there was a boxed set of 100 Western Classics here at the Gift of Life Transplant House. I should get through them all by the time I leave.

STEM CELL TREATMENT BEGINS!

Today was my first day of the Stem Cell Treatment process at Mayo Clinic. The day was filled with tests and examinations. My day started at 0730, I reported to the Transplant Center and picked up my appointment schedule and instructions. My next stop was the lab for urine samples and blood draws, there were about 20 vacutainers of blood drawn!

At 0940 I had an electrocardiogram that only took a few minutes and I was on to the Gonda Building for some pulmonary function testing, this took about an hour and wasn’t very pleasant! At least there were no needle sticks at this station! Tracy took off after this procedure so that she could pick up the girls and her and Sumner headed for ND!

After lunch I had a bone marrow collection, I was sedated for this – I had this done in Fargo without sedation and it hurt like heck. This went well and I was in and out in about 1 1/2 hours, they fed me there, my fist food since 1900 the night before.

My last stop for the day was at the Division of Oral and Maxillofacial Surgery for an oral exam (not a pop quiz – dental exam). That went well and they said the numbness that I am experiencing from the wisdom teeth extraction should go away soon.

I caught the shuttle back to the motel and called the Kahler for a room for the next couple of days, it is cheaper and closer to the clinic. Tracy and I also toured the Transplant House today and got on the waiting list, hopefully I can get in soon! But I have to arrange for a caregiver since Tracy can’t be here, unless we wanted to leave Sumner in charge of the house and the girls!

Tuesday is another action packed day! It starts at about 0600, I have to pack up my stuff and get on the shuttle to check into the Kahler before my first appointment at 0730 – again fasting! The first appointment is for a PET Scan at 0730 and then off to a chest xray at 1045 and a skeletal bone survey at 1115. I meet with the social worker at 1345 and then an echocardiogram at 1530.

Wednesday starts at 0815 with an MRI and then to the transplant center for educational classes and access evaluation. Thursday I report to the Tranplant Center for team meetings with the transplant team and Dr Hayman, the Hematologist. Friday looks like the day they start the bone marrow conditioning, priming the stem cells, I had neupogen in Fargo and that is bad karma, very bad karma – the worst, deepest pain I have ever felt, the only thing that seems to help with pain is Celebrex and that didn’t help much! Novemeber 2, Monday, looks like the day they start the stem cell collection procedure, that is scheduled for the whole week! I wonder if they get enough stem cells early if they will start the high dose chemo and re-infussion sooner????

This already seems like a really long process, no Tracy, Sumner is not here talking about cars and Kasidee and Savannah are not running around. Hannah Montana is not on 3 tvs at once. I will have to miss a few episodes of Zach and Cody but I am sure I can catch about 10 episodes about the Masons on History Channel!

Day After Wisdom Teeth Dat (WT +1)

08/28/09 Day After Wisdom Teeth Day! (WT +1)
Posted 1 hour ago
The day after i had my wisdome teeth out! Not much happened since my last post except i am in innovis hospital – again. after the extraction my temp really spiked and they heard crackling in my lungs – pneumonia. I was in the ER at about 1300 and then admitted about 1700 on Thursday. I should be going home Saturday morning – I hope.

It seems that the wisdom teeth thing went well, a little pain, more numbness but i have to be careful of what i eat.

Hope I get out Saturday!

Wisdom Teeth Day

08/27/09 Wisdom Teeth Day
Posted 1 day ago
Today is the day that I get my wisdom teeth out! I am scheduled for oral surgery at 0730 CDT. Sumner is taking me in and bringing me home (I hope). Tracy has nursing classes today and it is difficult for her to miss, Sumner on the other hand jumped at the chance to miss a half day of school. I contacted the school a couple of days ago and they were to give him the assignments he would miss so he could work on them while he waited – he might as well, all of his friends are in school so he has no one to text.

The decision to take my wisdom teeth out and extract a broken tooth was actually made in Jan/Feb 2009, just before I was diagnosed with MM. Well those plans came to a screeching halt and I never thought of it again, no pain or anything. The transplant center at Mayo wants all dental work done before you get down there and start the transplant procedures, if not they will do it there and that just adds weeks to the process and more trips back and forth. also, the dentists do not really like to do much work when a patient is on zometa I guess because of issues with the jawbone.

Oh, by the way, I am scheduled for stem cell treatment starting October 26, 2009.

Being back to work is really nice, having a good time especially lately since my energy level seems to be returning to normal and I am getting involved a little in the Bio Lab, it is fun re-reading and re-learning their SOPs and processes. I made the last of my schedued presentations last night for training in Good Documentation Practices for GCP and GLP applications. The new hires are kind of the freshman when i used to teach, some of the refresher groups are like the 7th period study hall seniors!

Med update:

Revlimed @ 25 mg/day on days 1-14 and 2 weeks off
Dexamethasone @ 40 mg every Friday
Velcade infussion with Dex on days 1, 4, 8 and 11 then 2 weeks off
Procrit every 3rd Friday

Neupogen (bad karma on this one) everyday for a week when my white blood count drops too low. worst pain I have ever felt!

Well, I have to wake Sumner up and get ready to hit the road! Thank you to everyone who continues to pray for me and my family.

Will add more later!