Life After Transplants

After my last transplant in December, it was nowhere near over. I still had to go back to AR January, February, March, and April for more procedures to fix my vertebrae, infusion visits, and follow-up testing.  I was told it may take up to a year to recover.  I would need to lay low for at least 100 days because my immune system was extremely fragile.  So the first thing I did when I got home after transplants was take the fam to Disney world, like any responsible adult!  I threw caution to the wind.  I had endured enough and everything kept insinuating a very early death so why not.  I wore an N-95, rented a scooter at the park, and had a great time watching the girls enjoy themselves.  I did not share this adventure with my doctor!  He would have been extremely disturbed!  In January, I anxiously awaited my test results and cancer markers.  I hoped so badly I would be declared in remission.  Unfortunately, after BOTH transplants, my m-spike was still .9.  Just to give you a reference, they typically begin active treatment when your m-spike reaches .5 as this is when it can begin to wreak havoc on the body and organs.  I was again devastated.  .9 was high after two transplants, one being a BEAM transplant.  I was just at the point where bad news just came to be expected.  Besides the stem cell collection win, bad news was literally all I had gotten.  The only solace was that after April, I could be HOME with my girls and new baby, after missing most of her 1st year.  I distinctly remember coming home from AR after the transplants and Chris pulled a comfy chair beside the fire.  Football was on and Chris was cooking and the girls were playing.  It felt like HEAVEN compared to the lonely, cold, constant poking and prodding hospital life.  I needed to just soak in being home. It was hard on everyone trying to live a new life after transplants.  I was a different mother to the kids, a different wife to Chris.  I was a stark contrast from what I was before transplants.  I needed to sleep- a lot.  I would wake up, participate in life for about an hour or two, then get exhausted and take a nap.  I would wake back up in the afternoon and then be ready for a second nap shortly after.  It got to the point where the girls would get upset when I headed to my room because they knew they wouldn’t see me for a few hours.  I felt like I was always sleeping.  I also had lost a ton of weight and had no appetite.  I had to force myself to eat and nothing ever seemed appetizing.  I couldn’t do a lot of the same physical activities I had done before as a mother.  I couldn’t lift Hayden because my back was still so messed up.  I couldn’t lift anything heavy or move too fast.  I was constantly walking around on eggshells hoping nothing else broke back there!  Hayden probably didn’t notice as much as Charlotte.  She was too little.  Charlotte clearly knew this was not the same mom she knew before.  Bald, frail, weak, always sleeping.  Chris took over as a caregiver rather than a husband.  He helped wash my hair when my back was broken, got me dressed, brought me meds and food.  Everyone had to adjust to the new normal and it wasn’t easy.  The transplants also caused tachycardia.  I would have a super high heart rate upon standing and sometimes felt like I would collapse or pass out.  I remember making myself a cup of coffee one day and my heart rate spiked.  I began to feel super faint and my back began to spasm.  I told Charlotte to go get daddy as he was in the shower.  I went down to my knees so I wouldn’t faint on hard tile.  He rushed in and carried me into the living room and got me cold washcloths, Charlotte shrieking the whole time.  There were definitely too many moments I wish she didn’t have to witness at the age of 5.  Life was different for sure, but after April, I was just basking in the pure joy of being back home and among the living!