Goodness. The haziness of those days of illness faded quickly. I had received 14 units of blood (each unit is about a pint), been through emergency surgery and basically come out ok. The BMT was still on. Time for chemo. Yay.
I was undergoing a “reduced intensity” chemo. This means that I would be doing 4 days of flu/bu (nickname for the chemo). All I have to say is that for “reduced intensity,” it was awful, terrible, horrible and any other bad word in between. The first day was ok, but then the nausea started. And just never stopped. My hair fell out, again. The nausea was intense. I could not eat a thing and was completely and utterly miserable. I drank minimally. I was definitely reliant on the IV. It was relentless. Then on day 5, I received a precious gift- my bone marrow. A 25 year- old male from the U.S. had blessed me with something priceless. In my fantasy, this was going to be a celebration day. My children would be there and we would be dressed in matching t-shirts. We would usher HLH right out of our lives. In reality, I took a ton of drugs and slept through the 4 hour infusion. So sick, I could barely lift my head. But we had made it.
Unfortunately, the nausea continued, day in and day out. The doctors were trying, “it will get better the further you are away from chemo.” I was on every drug that they would think of. Both anti-emetics (straight nausea meds) and psychotropics (medicines that work on the brain- which has a big role in nausea and vomiting). They helped in that they let me sleep, but as for eating… Between the Campath reaction, GI bleed, then the transplant, I truthfully had not eaten in weeks. I could get some Gatorade across my lips, only to vomit later on in the day. I was vomiting 1-2x per day, regardless that I had not eaten. I was so foggy in the head too. So many drugs- making it a challenge to focus on any conversation. But, I was “well enough” to get to rehab again. I was ready, miserable but ready.
The fogginess worsened. And really, I don’t remember going to rehab. I do remember some gorgeous goldfish and some wild baby bunnies that occasionally showed up in my room and I thought it may be important to tell the doctor about them. (My first hallucinations! Mom, would be so proud.) Back to the ED. Greg met me there. Another admission. I had barely been out 24 hours. Once again, I don’t remember the majority of this. It proved to be another very trying time for Greg. He had noticed that I wasn’t myself (who would be after all of this?), but as he spent more time with me he knew something was wrong. I would try to get up alone (not a good idea when you have a 3″ discrepancy between your two legs), I told him some wild stories… I do remember him abruptly leaving the room to “go talk to the nurse.” I was so mad!! He was there to see ME! Why was he bothering with the nurse?!? I was not alert and oriented x3 (a judgement of mental status- oriented to person, place and time). What was wrong? Stroke? HLH? Some other malady?
Fortunately, this was almost an “easy fix.” I was over-medicated. As my admitting attending said, “they were killing me with kindness.” They discontinued every psychotropic medication, and I became my very nauseated self again (not that the medications were really helping). Everyone insisted that the nausea should be improving…. unless graft-versus-host (GVHD) was already settling in? Ah, ha! Yes it was. Welcome back steroids! My savior and my nemesis, the dreaded steroid. But what else is there to do? I am back on steroids, living my life and beating HLH. Hoping sooner rather than later, me and my donor will learn to get along, so that we can stop the steroids.
Would I ever be able to stay out of the hospital? I had accumulated almost 3 months of continuous hospitalization. Not a record one wants to hold. Back for more rehab. But then something happened. Rehab couldn’t take me for insurance reasons. I would have to stay in the hospital until they found placement for me. This could take weeks. Ohhhhhh, nooooooo! I was getting claustrophobic, anxious and so tired of being alone. I cried out to God- “please let me go home! Please help me through this!” Greg gave me a long pep talk. But what it came down to was; I couldn’t go home, if I couldn’t get up the stairs. Well get me a Physical Therapist- time to show them what I was made of. I got up the stairs.
Winter is over. Time for Spring.