AML: Day -4

Not a lot of news today.  I got my last dose of chemo this afternoon.  Only 2 doses.   Radiation starts tomorrow.  Probably the most nervous about that.   When you get a parade of doctors telling you the risks of every procedure... It weighs on a person. 

So the chemo is done.  Turns out one of the drugs causes hiccups.  I've been dealing with them most of the afternoon.   Only slightly nauseous.  Getting more and more tired.  \

The cardiologist stoped by.  They are starting me on some drugs to try to protect it since my echocardiogram has me at the low end of normal in the amount of blood it pumps with each beat.  They say not to be worried, but all say it is unusual for my age.  It's the danger of all this chemo... It can be hard on the organs. 

Everyone still says that I am in great shape for this... So I will go with that.   In all a good day.  Glad to have my girl with me after all the lonely days in Sanford. 

New Twitter Feed

In anticipation of days I do not feel like writing lenthgy blog posts, I added a twitter feed in the right column of the blog  I will post brief updates there.  The tweets may become part of posts later on.   But I can tweet faster then I can blog.

You can follow the specifics of my stem cell transplant in twitter @goaheadpokeme or click "Join the Conversation" at the bottom of the widget on the right.

AML: Day -5, Station 94

There was not much to tell yesterday, so I didn't post. I just had to report to the hospital to get my port dressing changed and flushed. We moved into the Gift of Life House and relaxed.

I reported to the Methodist hospital at 7:45 this morning to Station 94. Station 94 sounds kind of cool, like we're in some secret government facility. Unfortunately, it turns out it is just me and a bunch of other sick people.

Disclaimer: In an effort to help people understand the experience, I've decided to share more of the more "personal" elements of this treatment. I've keep some of the things to myself up to this point, but am hearing from others that are in similar situations as I. So I want to paint the full picture.

The room here his very similar to what I am used to at Sanford. The room has its own air filtration system. People have to wash their hands as they come and go.

My meds started right away. I don't have all the names but here's the basics

Actigall: Conditioning and protection for my liver. (I started this a few days ago)
Antifungal: Preventitive for fungal infections
Antibiotic: Preventitive for bacterial infections
Antiviral: Preventitive for viral infections
I also get a shot in the belly that is additional protection for my liver.

The chemo I am getting is called Cytoxan. It's a nasty one from what they tell me. So much so that it will burn the lining of my bladder if we don't do something about it. So that brings me to the more personal part of this. To protect my bladder they have to do a constant flush while I am on the chemo. So I get a new experience... my very first catheter.

Ouch. I am glad it will only be for 48 hours. I am not sure how anyome would get used to something like that. The good news is I should be able to have some epic Xbox sessions as I won't have to get up and go to the bathroom. Like I said, it is a constant flush... they push liquids in, I push them out. So I have literally been peeing since 10:00 this morning.

I've finished my chemo for the day. So half done with Chemo. Everything is going fine. No major side effects yet. Some tiredness, but that is about it. Appetite is fine and the food has been solid. Once the catheter is removed on Tuesday, I'll have a little more freedom to come and go. Even leave the hospital between radiation treatments if I want. We will see.

Andy arrived tonight (YES!). Mom will head some in the morning.  Mom has been great company this week, but I don't think she is used to the slower pace.  So at the moment I have the luxury of having both my caregivers taking care of me.

I am comfortable and doing well.

AML: Day 5 @ Mayo

Today is a shorter day.  Just a couple of things going on.  It started early though.

5:45 am
Reported for surgery.  This surgery is to place my Hickman catheter.  I have not had not had one of these since my first round of chemo where it got infected with MRSA and was removed.  Surgery started about 7:45.  It went well with one minor issue.  Just as they were about to start, i realized i was not as sedated as i was feeling a few moments earlier.  I commented to the group of doctors and nurses.  They took a look and noticed my IV had come lose.  So i was not getting and sedation or fluids. 
They fixed and a few minutes later i was under.  By about 9:15 i was back in the room and things were done.  I now have 2 tubes poking out of my chest which they  will use for chemo, meds and blood draws.

10:30
I had an appt with a Dermatologist.  Considering I just had surgery, i was glad this was in the same building.  I didn't have to walk too far.  They are just looking for any issues and getting a current benchmark.  One of the first things to be affected will be my skin.  Got the green light, all is good.

11:00
After the dermatologist I visited with one of my coordinators Michele about some blood draws she needed for one of the research studies.  She was aware of the timing of the arrival of the stem cells.  They probably would not arrive until early or late Friday.  So I won't get the transplant until late Friday or early Saturday. 

1:45
One last class about my chemotherapy.   Some good info here about the actual procedure. 

So not many appointments, but the early start and surgery has me worn out.  Relaxing the rest of today since I am very sore from the port placement.  The incisions don;t actually hurt... but some of the muscles in my neck and sholder are hurting. 

Moving into Gift of Life house tomorrow.

AML: Gift of Life Transplant House

So, we have spent some time this week looking for lodging.  The people at Mayo don't really offer help for this.  It has been a bit of a challenge figuring out the options which there are many.  

We were directed to the Gift of Life Transplant house early on.  But it was necessary to get a tour before being considered for a room.  Rooms are also based on availability and they can't be reserved more then a few days ahead of time because people come  and go based on their treatment schedules. 

We managed to find a break in our schedule to tour the house today.   They have 2 houses. Both just a few blocks from Mayo and across the street from each other. 

There are a few things about the facility that were causing me to have reservations about staying there.  #1:  No kids under 17.  In the end, this is not a huge issue.  The kids won;t be up too often and when they are I can go to them.  #2: no TVs in the guest rooms.  They say they do this to encourage people to be out and about more, I am guessing it really is about cost savings.  They do have Internet access in each room, so I will have the connectivity I need to keep myself occupied.  That is Xbox Live will work fine. 

We (Mom  I) toured the facilities and it really is a no brainier.  This is the place to stay.  It is only $25 a day and we will be very comfortable.  We were told roughly half the other people staying are there for stem cell transplants like me.

At the end of the tour, I said that we wanted to be on the list.  It actually took a few tries to get the message across that we wanted to be on the list right now.  I guess most probably tour weeks in advance. 

So the big question is availability.  When would I actually be able to get in.  I had been led to believe this could be a problem.  I know there are people sending prayers my way and here is another indication of prayers being answered.  Turns out that they had a room available immediately in their newer house.  They took us over, showed us the room and signed us up.  Lodging issue resolved.  Just like that.    Another huge burden lifted. 

Best part... Even though I will be in the hospital next week, Andy is allowed to stay in my room during that time.  So as of Saturday and for my stay here, our address in Rochester will be:

Gift of Life Transplant House
Attn: Jon Grann,  Room 249
724 Second Street SW
Rochester, MN 55902
Note:  I can't have flowers or plants...

BIG TIP... I wish someone told me:
If you are looking for lodging here, and there happens to be no availability at the house, they have arrangements with local hotels and will get you a room somewhere until something opens up.   This info was not on their site and was not volunteered when we called and were having trouble making a tour work in our schedule.   I would seriously suggest everyone start here.  They will get you a room and if the arrangements are not to your liking, you can move out any time. 

AML: Day 4 @ Mayo: Going FISH'n

Today was one of the more productive and informative days. 

7:45
Meeting with my transplant coordinator.  She (Marsha) took me through the schedule for the pre-transplant conditioning.   I will be admitted to the hospital Sunday morning to start chemo.  I will have chemo Sunday and Monday then radiation.   I will be inpatient all week and will be released after that transplant on Friday or Saturday morning assuming all is going well.  We talked in detail about Graft vs Host Disease   More about GVHD later.   I signed up for a few more research studies.  They wanted permission to take blood samples to study to monitor my progress.   Mayo tries to get everyone going through the transplant to sign up, so this is not related to my general awesomeness. 

9:15
Meeting with Pharmacist.  They took me through the drugs I will be on to prevent infections and GVHD.  We talked about side effects. Pretty standard stuff.   Here's something regarding the meds, as an inpatient, there are no copays on meds.  As outpatient which I will be, I am responsible for copays for all meds.  For something like vfend (an  anti fungal) even the copays are pretty high. 

11:00
Tour of the Gift of Life Transplant house.  Several people suggested this place and a good option for lodging for the duration of my stay here.  I'm going to write another post tonight about the transplant house.  Short story, they have a room available so I decided to take it.  Lodging issue resolved. 

2:30
Bone Marrow Consultation.   Met one of the hematology doctors.  He is pone of the team that will be involved with the transplant.  The nice thing is a lot of the work is done as a team of doctors and nurses.  So there are many people involved in monitoring an decision making.  The Dr. just checked me out and ran over things in a little more detail.  All good.   

A couple interesting points:

• The radiation they are going to give me is a full dose radiation.  They often do a lower dose because the age of the transplant recipient is generally higher.  In my case they are going to hit me harder because I am younger and should tolerate it better. 
• My donor is the same blood type as me.  So my blood type won't change. 
• The FDA considers my donor to me ineligible because they are from Germany.  The reason is because of BSE (Mad Cow Disease).   Because of the outbreak of Mad Cow Disease in Europe many years ago, the FDA still considers that donors from Europe to be ineligible.  The funny thing is that Mayo can ignore it and proceed anyway because of the high risk nature of my cancer.   The Dr remarked that there is a high percentage of matches that come from European countries.  If it were not for the international donors, there would be FAR fewer matches.

2:45
Surgical consult.  I need to have a Central line (Hickman catheter) placed.  The surgical resident came in and took me through the procedure and the risks.  Remember I have mainly had PICC lines.  This long term port will be an adjustment.  I will have surgery in the morning to place the Hickmann. 

3:30
Visit with my doctor.  Dr. Hogan.  This is the first time I have seen him since January.  I like him.  He is to the point, full of info and explains things in detail.  He kind of wrapped things up.  Have me more detail and some new info. 

• My tests are coming back as we hoped.  I am still in remission. 
• My heart functions are a little lower then normal. That is I am not pumping quite as much blood with each beat as I should.  It is believed this is cause by the cumulative effect of all my chemo.  It is something they will monitor but it is not low enough to be of major concern right now.  This is why these tests this week are important, they can monitor this to make sure we don't need to adjust treatment. 
• My kidney's and liver are working fine.
• There are no chromosomal abnormalities in my DNA right now.  (My biopsies when I was not in remission indicated an issue in the 11th chromosome of my Leukemia cells).  Right now, everything including my spinal fluid is clear. 
• Dr Hogan ordered a FISH test on my DNA to see if there are any chromosomal issues that are not obvious.  Basically a FISH test lets the doctors look in more detail to see if there could be issues to look out for.  Because my leukemia presents with problems in the 11th chromosome, they want to look at my normal cells in more detail to see if there could be some underlying condition. 
• My donor is a 9/10 match and male (from Germany).  The one protein that does not match is the DQ marker.  Dr Hogan said that if there is one that you want to not match, it's this one.  Generally there is a 10% higher risk with each mismatch, this one however does not have a statistically higher risk.  This is good news.  It essentially means it's as good as a 10/10 match. 
• My donor tests positive for the HCMV virus.  I do as well.  50-80% of people in the US have this virus, 40% worldwide.  For the most part it does nothing, but it can be very dangerous for immune compromised people (like I am going to be).  Becasue they are aware of this, they can monitor the virus for reactivation.  I am told they can detect even a flicker of reactivation and if that happens (which is rare) they can treat with stonger anivirals. 
• It happens Dr. Hogan is the director of the department here.  So I count myself very fortunate to have him and my primary doctor. 

As you cant tell from this post... It was a lot to take in today.  I am starting some of my meds tonight to begin conditioning my liver for the treatments.    With all this info and lodging issue resolved, we are in a good spot and I am beginning to have a handle on everything. 

Doctor said things are essentially as optimal as they can be and we are good to proceed.  It is good news.  

Surgery and a few more tests tomorrow...   Saturday off and Andy joining me on Sunday (I miss her).   Almost there...

AML: Day 3 @ Mayo

The day started early with my first consult at 7:00. the good news is I had no headaches from the Lumbar puncture.  I felt a little off, and sore, but no headaches. 

7:00	Meeting with radiology doctor.  I will have 6 rounds of radiation next week.  The doctor took me through the procedure.  Full body radiation.   He mentioned that the the chance my lungs would explode is very remote.  So that was good to hear.    I am nervous about the radiation.  It's a unfamiliar element.
9:00	Bone marrow measurement.  I got to meet a couple of Physicists that took different measurements when I was sitting down in the machine.  They are going to build some kind of lead shield that will even out the radiation they are going to hit me with.
10:00	Echocardiogram.  This is a ultrasound of the heart.  It took about and hour for them to get the pics they wanted.   Pretty simple test.
2:00	Meeting about the financial side of the transplant.  This was basically a waste of time.  They had some basic info about my insurance, which I knew.  Then they showed me some paperwork that was from 2008 about the cost of inpatient transplants.  Mine is outpatient and when I mentioned that, they had no paperwork for that scenario.  So we met, but my financial advisor couldn't tell me ANYTHING.   Wonder how much that consult cost?  Since they had access to my insurance info, I would have expected they could take me through the costs of a typical transplant and give me some guidance as to what things cost out of my pocket.  I really don't need to know what the insurance is going to cover.
3:00	Eye Exam.  This was just another test to make sure there are not issues or infections.  I went in at 3:00 where the nurse did the basic assessment and gave me drops to dilate my eyes.  at this point I was to see the doctor.  They put me in this small waiting room and I waited for 2 hours.  Finally at 5:00 the doctor called me back, spent literally 2 minutes with me, looking in my eyes and sent me on my way.  They didn't even give me the opportunity to put my contacts back in so I had to stumble around (eyesight is very poor without contacts) finding my way back to the waiting room and then to a bathroom to put in my contacts.  What a way to end the day.

So I can't say that today was overly productive.  The tests in the morning went really smooth.  In the case of the dentist yesterday and the eye Dr today, I wonder if they really spent enough time to see anything.   I only saw the dentist for about 4 min and the eye doctor for 2 min.   I trust they have it all worked out. 

For the most part, the people here are great, and most of the procedures are going fine.  I don't want to give the impression that things are not going well, it just is a little strange at some of the things going on.   The engineer in me struggles with all the inefficiencies. 

Tomorrow is a full day and should be very productive with most of my actual consults for my treatment.  I should have plenty to tell tomorrow.