Countdown To Day Zero

I can’t believe it is already almost time for my transplant. It's scheduled exactly 2 weeks from today - January 20th.  Even though it’s only been a few months since  I was first diagnosed, it feels like eternity waiting for this to all come together. Day zero, or my “rebirthday,” is the day of my transplant and then day 1 is the day after. They closely monitor patients for the first 100 days and then it slowly tapers off if all is well. People still count how many days they are post transplant years after. I saw someone write that they were something like 1100  days post transplant....pretty awesome! Like I have mentioned before, the transplant is in no means an end to this journey…rather the beginning of another very long one. I had my testing day last week, where they did all of those tests I talked about in my previous post. They all came back normal, including my 2^nd bone marrow biopsy. So I am STILL in complete remission, praise God! My heart, kidneys, liver, etc all look awesome and are still functioning correctly, even after so much chemo. I had a lumbar puncture where they took a sample of my spinal fluid to make sure no leukemia was hiding out and the procedure was easy peasy, but the recovery not so much. One of the side effects can be a headache, and it’s not just any headache…more like a migraine headache so I was strapped to the couch and bed for 4 days after my LP. The only relief was lying down, otherwise my head felt like it was going to explode and I was going to throw up. I was actually scheduled to do another procedure called a blood patch where they go in and fix what is causing the headaches, but luckily it healed on its own and now I’m feeling normal again!

Yesterday we had a meeting with several people, including the doctor. He just went over things we pretty much already know from our other meetings with him. He went over how the day of the transplant will go, and what to expect the first 30 days, then 60 days, etc. It can vary a lot from patient to patient, but in general people will experience similar things, especially with GVHD. He also informed us of the drugs I will be on post transplant, including an autoimmune suppressant for the first 180 days. And then it will taper off if things are going well. That’s what will restrict me from going out in public until I am off of it because it will suppress my immune system even more than it will already be from the chemo and my counts being low. He is very optimistic in my recovery as well as me beating this disease for good. As am I!

There are so many things that go into the transplant process one would never think about. I had no idea it was this involved and intense, but it is a huge and serious procedure, so I see why they do it, We’ve had so many meetings, I’ve signed so many forms, I’ve met with so many different people including physical therapy, occupational therapy, pharmacy, financial counselors, midlevel practitioners, doctors etc to get things in order and to educate ourselves with everything to do with the transplant. The next big thing I have scheduled before I start chemotherapy is to get a catheter placed in my chest. This is where they will administer anything I need via IV, which is pretty much everything including the cord blood (drugs, antibiotics, blood products). Right now I have a PICC line in my arm which I have had since the first day I got diagnosed, and is basically the same thing as the catheter but in my chest. That same day I will get my first dose of total body irradiation. I have no clue what to expect from it, or how it will be done, but I’ll let you know how it goes. Then the following day I will start my first day of 5 of chemotherapy. One thing that I have struggled to cope with, but have found a way, by the grace of God is all of this destroying my fertility. I was blessed enough last time to somehow have the opportunity to get pregnant and have my perfect baby so soon after my treatment. There was always the possibility that my fertility would be affected, so Londynn is quite the miracle. However, the chances that this will throw me into menopause is pretty certain. I am not going to lose hope though! I am certainly at peace if we are not meant to have any more children and am so fortunate to have had the chance to have one, especially after what I have been through. But I do believe in miracles (I have seen so many in my short life), and that my life will follow God’s plan, and not what the statistics show.

Many people have wished me good luck on my surgery, which I see why they would think it’s a surgery, because I’m pretty sure any other transplant is. But luckily there is no surgery involved, and only a transfusion into my body. The cord blood will look like a bag of blood, and they will hook me up and start the transfusion. If it’s like any other blood transfusion it won’t take long. A regular blood transfusion takes about an hour so I’m assuming this will be similar. Since I’m getting a double cord transplant there will be 2 bags of blood, so it will take a little longer.

I am feeling great and strong going into the transplant. I do certain exercises every day to help keep my strength up since I can’t go to the gym, and really don’t have the energy to. The only “bad” thing I feel is constant fatigue. My blood levels are still low so it’s expected, but I manage. I still have enough energy to chase after LK all day (most days anyway)! I still receive so many wonderful cards, messages, calls, emails, etc, and am so grateful for the continued love, support and prayers. It really makes this process easier having such a strong support system right by my side. I hope everyone’s New Year is off to a good start!