A round of immunosuppressant shots for everyone bartender!

Day 63 and still going well. J  Had my 2^nd dose of spinal chemo yesterday with Dr. Morris and an appointment with Dr. Nash in the afternoon.  Both docs were pleased with how everything is going and Dr. Nash even said that things are going well enough that he can proceed with the protocol for tapering my immunosuppressant medication.  He said that if things continue to go well, I might be able to be off the immunosuppressant medication by 6 months post transplant! That would mean that I could finally go out in public and while I would still have to be careful not to be around “sickies” I could do more fun things.  As much as I LOVE being home, I would really like to be able to go out and do more things (movies, shopping, lunch & pedicure with a friend, take Scotty to the Denver Zoo, go to the pool to exercise, etc).  I’m trying to be patient (but I was SO excited to hear that I might be off the immunosuppressant by the holidays!!!

Each “step” down on the med will be 20% of the dosage.  I was already on the lowest dose of pill form of the immunosuppressant medication so now I have to take liquid and use a teeny tiny syringe to measure out 8cc’s of medication when I take it twice a day.  The liquid is super bitter so I mix it with really tart yummy lemonade in a shot glass & shoot it and chase it with Gatorade or OJ.  I am also up to 4 magnesium pills per day, getting ready to increase to 5 pills per day.  Once I’m up to 8-12 pills per day, I should be able to stop needing the IV magnesium infusions.  The nurse that we saw at the clinic yesterday also told me that some patients who are doing very well get their central lines taken out just after Day 100.  I REALLY hope that is the case because I would really like to have it gone.  Don’t get me wrong, it has served me well and its been awesome not to have to get IV’s placed for infusions and blood draws multiple times per week, but I’m tired of it and I would love to know that I don’t have anything foreign sticking out of my chest anymore. J

On a fun note, my eyelashes and my eyebrows are starting to grow back a tiny bit!  I have little tiny baby eyelashes and apparently Kyle gave me some of his “eyebrow cells” because my eyebrows look like they are growing to come in very dark and thick (I anticipate a trip to the salon as soon as Dr. Nash tells me its okay) J lol.  Still haven’t noticed any hair growing on my head yet, but the fact that other things are starting to come back is exciting!!!

I am also getting ready to register my fundraising/walking team for the Rocky Mountain Chapter of the Leukemia and Lymphoma Society’s “Light the Night” walk at Washington Park in September.  We are still trying to come up with a creative name for our team (feel free to email me with any suggestions)!  I would absolutely love for anyone here in the Metro area to join us for the walk on September 26^th (a Thursday evening).  The LLS has been incredibly helpful to us over the past few months (providing literature, connecting me with fellow leukemia patients who have been through the treatment and stem cell transplant process, etc).  We would really like to help them fundraise as they contribute lots of funding to new & ongoing leukemia research and are an amazing resource for blood cancer patients!
-Chellie