Blog Entries

Time for an Update

Still on Track 2802554397_b45da1a395
I had visits with Dr. Nelson on 12/28 and 1/11.  The days in between appointments were a little dicey, but the appointments themselves went fine.  After my 12/28 appointment, I started having stomach issues.  I threw up for 3 days straight and had corresponding issues on the southern end.  I had to change my diet to really basic things like cheerios, apple sauce, potatoes, etc.  The bland diet helped and I only threw up one more time.  Dr. Nelson thinks it could have been a continuation of the virus I had or some GVH that improved because we increased my dose of both immuno-suppressants.

BMA, I’m on my Way!
As part of this process, I get a bone marrow aspiration near day 100.  My aspiration is scheduled for 2/1.  The purpose is 2 fold.  First, to make sure I don’t have any signs of Leukemia and 2nd to see how well my donor cells have grafted.  Ideally we’d see that the blood cells are 100% from the donor, although sometimes that doesn’t happen until later.  It will also be interesting to see if my blood type has flipped to A-.  That is something that happens over time and I haven’t had any blood typing recently.

Until Then
I don’t have to see Dr. Nelson again until the BMA.  I’ll go in for blood draws the next 2 weeks, but won’t actually meet with him.  He said I continue to do well and am in the top tier of recovery.  He also said don’t get to anxious to be ahead of where I’m at.  Just let my body heal as it needs to.  I’ll admit that is hard some days.  Some days I feel well enough to jump back into “normal” life.  Then I throw up for 3 days and realize maybe not quite yet…

And the Powerball Numbers are:
Nothing too exciting to report.  My labs continue to fluctuate, which is what they are supposed to be doing.

1/11/15: WBC 2.9, Hemoglobin 12.3, Platelets 116

The Tacro Tremor
I have developed an annoying side effect.  Tremors is one issue that can be experienced when taking Tacrolimus.  My tremors seem to act up at inopportune times.  Forget about texting or something that requires fine motor skills.  Heck, even forking my dinner into my mouth is a little tricky.  One day we’ll reduce the tacro and one day the tremors will subside, but until then if you get any weird messages from me, just chalk it up to the tremors.

A Duck Dynasty Prayer
God, today I am reminded that not everyone beats cancer.  Even with the backing of prayer and all the doctors and nurses you need, not everyone is cured.  I thank you for the 3+ years of life I’ve had since my original diagnosis.  I pray that you be with those recovering along side me.  I also pray that you be with the families of those who have passed on.  Especially tonight the family of Andrew Smith.  Thank you got for the will to fight.  Thank you for the hope you provide.  Thank you for the assurance of eternal life.  Thank you for another day.

Ups and Downs

My Appointment on Monday 12/14
I kept my weekly date with Dr. Nelson on the 14th.  He was pleased with my progress and happy to see that the cold I had the previous week was getting better.  He said this is a sign of a healthy graft as my counts are stable and I didn’t end up in the hospital because of the cold.  Apparently around 50% of people in my situation end up admitted.

The other big news of the visit is that I graduated from having weekly appointments to only having to go every other week.  This helps a lot as I don’t have to get my butt to clinic every week.  It will also trim the costs a little bit as my OOP resets on 1/1.

Lindsey Down Lindsey Down!
The other thing that happened on 12/14 is that Lindsey became sick.  Seeing as she’s the one who holds this whole thing together, this wasn’t a good thing.  She stayed quarantined in an extra bedroom for the next day and a half.  Thankfully the grandmas were able to help out, as I wasn’t going to make it all day.  The sickness lingered a bit, but thankfully she was able to be out of the bedroom on Wednesday 12/16.

Continue reading Ups and Downs

Back to The 5%

Quality Time with Dr. N 
Monday was my normal appointment with Dr. Nelson.  My creatinine is now 1.37, so it’s back in the normal range.  Since my kidneys are happy again, we’ve increased by Tacrolimus dose to 2mg a day.  When I first started, I was taking 6 mg of tacro, so this is still well below my initial dose.  At this point we are trying to maintain the lower therapeutic range for the drug.  I need to stay at a therapeutic level so I don’t get full blown GVH, but we are staying at the lower end to increase the chances of Graft vs. Leukemia.  I’m back to weekly visits, so my next visit will be Monday 12/14.

It Was Inevitable
With 3 young kids in the house, 2 of which attend pre-school, it was only a matter of time before one became sick.  Of course when one gets it, they all get it.  So really it was only a matter of time before all 3 became ill.  Everyone has been snotting and sneezing for a few days now.  Sydney had a low fever over the weekend.  And me?  I have something, but I’m doing my best to fend it off.  Dr. Nelson said we need to keep a close eye on it because it could escalate quickly.  However, besides a runny nose and one temp of 99.7, I’ve been doing pretty good.  I’m a little more run down than normal, but I’ll take run down over intubated in the ICU.  Dr. Nelson said my lymphocytes are in a good stage to help fight this off, so I have that going for me.  He gave a complex reason for that that I don’t quite recall.  I really should write some of what he says down, but he uses big words.

The Stem Cell Transplant Diet
I can’t in good faith recommend the stem cell transplant diet to you, but it’s hard to argue with the results.  For all the rounds of chemo I had, my weight never changed much.  Right now however I’m down around 30 pounds from my pre-transplant weight.  I’m hovering just above 200.  I’m kinda hoping to dip below 200 just for the fun of it, but I’m also eating a little better so we’ll see what happens.  The Stem Cell Transplant diet involves small portions and no pop, so I guess you could probably try it after all.  It’s not that I don’t want pop, because I do.  But my stomach can’t handle it right now and after not drinking it for 2 months it tastes too sweet anyway.

Lindsey’s Gonna Ride My @$$
So now that I’m feeling a bit better, Lindsey’s going to be getting me on the treadmill.  The threats haven’t started yet, but I guess that’s because she’s in the Christmas mood.  I need to build up my lung capacity and stamina in general, so walking on the treadmill will be something good to do.  Heck, maybe I’ll even run.  Back in the day I ran a few 5Ks.  Well, maybe they were 10Ks, I can’t remember.  Aw, heck you weren’t there.  I ran marathons back in the day.  Lots of them.  I may not become a runner again, but I see plenty of walking in my future.

It’s Beginning to Look a Lot Like Christmas IMG_5591
This year we have an artificial tree.  Lindsey has had this tree for longer than she’s known me.  It’s actually this very tree that helped let her know I wanted to spend the rest of my life with her.  When we were dating I looked at this artificial tree and declared “I want us to have real Christmas trees each year.”  Of course that implied we’d be together for each year and ever since then we have been.  Real tree and all.  This year though it’s just easier to put the artificial tree up.  The kids like it all the same and technically I’m supposed to stay away from plant life.  Chance of fungi or something like that.  Along with the tree, we like to hang up Christmas cards.  Let me admit for a moment that getting the mail is one of the highlights of my day (there ain’t much going on).  So even if we haven’t been on your Christmas card list in years’ past, if you find yourself with an extra one, send it our way.  It’s a nice pick me up to get some mail, especially Christmas cards!  Rob and Lindsey Culross, 6650 Silverthorne Way, Indianapolis, IN 46259.

A Duck Dynasty Prayer
Father God, I thank you for health and happiness.  I mean, having cancer isn’t exactly the blueprint for health and happiness, but each day is what we make of it.  Thank you for helping me make each day as good as it can be.  Let me delight in the good days and help me through the days that aren’t as good as I would like.  Thank you for my family and all their support.  Thank you for another day.