Thursday, January 16, 2014

Nights of Serum Sickness

The passed two days have been filled with excruciating bone pain and torturous screams and cries to the night.

January 13-14: A Night Of Firsts: A Long Day

I was complaining of joint pains to my nurse on that day (January 14), but since they weren't affecting my walking, my nurse said it could just be the chemo.  I noticed though that around 6 PM, my right knee looked swollen. I dismissed it as I was getting tired and my fatigue was winning, so I went to bed at around 8 PM. It was past 10 PM when I noticed my legs were both throbbing but tried to sleep it off.  

At around 1:30 AM, the pain was all over and when I wanted to get up, I have no control of my legs. I couldn't even stand and whenever I tried, my legs crumbled and my feet couldn't find the ground.  I woke up Kepi and on that same night I was wheel chaired back to the hospital.

Once we got there, my room was ready and the nurse were busy asking questions and getting little things done. I didn't care anything but for the pain to go away.  But since I've mastered the skill of politeness I indulged their questions, after all, the questions were about me. Within five minutes, the doctor appeared and examined me, with the pain I was describing, he decided on morphine right away. The first dose did NOT do anything. I even wondered if I even got the first shot at all.  Second shot. NOTHING. Third dose of morphine. BABKIS! I told them to better find another drug.

Doctors decided on fentanyl. I was given another shot. Only the pain on my neck disappeared. IT WAS NOT ENOUGH. A second injection. IT DIDN'T DO SQUAT!  The doctors decided to put me on a continuous flow of pain medication and see if that works. On top of that, they gave me a button to push if I want a higher doze of medication. I had nurses and technicians checked on me all night as they hooked me up that machine - Patient-controlled analgesia (PCA) (a method allowing the patient in pain to administer their own pain relief).

This machine continuously pumps fentanyl to my system every 10 minutes. The button on the right is a button if I want to add an additional 12 milliliter of the pain medication.
I did not sleep at all. I was crying, moaning and asking for deliverance. I may have dozed off, but when the need to go to the bathroom occurred, I cried of pain just by the slightest touch, but I have to be assisted to my bedside commode by a nurse and Kepi because I couldn't move both my legs. 

It came to a point where a bedpan was to be used for my personal relief, as moving me was causing me more harm than help. This night ended in horror. 

There's a first for everything.  These are my firsts: (1) an oppressive, inexplainable pain; (2) first time to use a bedpan; (3) horror of being unable to walk; and (4) I thought I was not going to make it.

When my doctor came at around 10 AM, he confirmed that I have Serum Sickness in the form of bone pain from the ATG treatment I received from Jan 1-3. He explained that only steroids can help quell the pain, but since I have two days scheduled for high dose chemo today and tomorrow, giving me steroid will affect the effectiveness of the chemo's purpose, to target T-cells that causes graft-vs-host-disease (GVHD).  My long-term doctor knew how I was afraid of GVHD so she decided and advised the team to not administer steroid treatment but will keep finding a way to help with the pain through medication.

My first high dose cytoxan was administered the same day. I was still having pains. At that time, I was more preoccupied with the pain than the chemo. This day was a mixture of tears and tired naps. Moans and pleas. Doctors increased my fentanyl twice that day; I was on that continuous PCA machine for pain. Nurses were in and out with additional pain relievers, anti-nausea injections, anti-anxiety drips, hot packs and cold packs. Beyond my pain, I did not dismissed their concern. They did not abandon me. They were my angels - a special mention to my nurse Rachel; she was wonderful.

Mom cried when she came to see me that day. I knew it was going to be hard on her especially that I could no longer walk or move both my hands. I couldn't even open my palm anymore. Dad was quiet. Kepi was quiet but I felt that he was worried and stressed out especially with everything he witnessed last night. I know they're all in shock. I was in disbelief. I was miserable.

January 14 Evening: I was delirious. I couldn't decipher where I was - probably in some sort of hell. It was another painful bedpan night.


January 15: First Steps

I was surprised to be alive. I thanked God for helping me through that horrible night, but I asked Him to fill this day with good surprises.

My second high dose of cytoxan was administered with the bone pains. I was imprisoned in bed for most of the day. I occupied my time with prayer and I kept my prayer shawl close. Doctors increased my fentanyl that day again. At some point, the continuous (through PCA machine) flow of fentanyl started to work. The pain on my neck disappeared. The throbbing of both legs stopped. I still couldn't move both arms and fingers but two most painful ones are gone.

In the afternoon, the doctor came to tell me that my transplant team decided to give me the steroids at 12 AM today, and that's after the full dose of cytoxan process is done. I couldn't wait. I want some type of relief.

Mom said I looked a lot better. I didn't believe her because I felt and looked like hell.

At around 3 PM, I wanted to go to the bathroom so Kepi wheeled me in. After relieving myself, I noticed I had more muscle control on both legs so I gave myself a chance to stand up and see if it's possible to walk. I grabbed the sink and gave myself a boost and support. I was wobbly and I noticed my right leg was stronger. I went for the first step, second and third. I was unstable but walking on my own. First thing I thought was…a shower. Kepi helped me out. I was excited. I cried.

That day, I took my first wobbly steps and walked out of the bathroom clean and renewed. I found it interesting that the day you are transplanted (mine was in January 11, 2013) which means your old bone marrow is obliterated and your new ones are introduced is also called your birthday. I've experienced two types of rebirth or renewal. I have to say that walking out, even if I was wobbly and unstable, from that bathroom clean and feeling renewed gave me a feeling of hope and restoration. I am not yet half-way finished with the treatment, but a new hope arises that with God, self trust, faith, prayers and family/friends' support - anything is possible.

I didn't even hear the nurse came in with the steroid that night.

This night, I used my bedside commode. I let Kepi slept for the early evening and tried to get up on my own. He deserved some rest. I only woke him up when I couldn't manage getting up anymore.  My legs were still shaking and both my arms were now stiff and my fingers were in pain.


January 16, 2013: Sitting By The Window Tonight - Baltimore Looks Quiet

I just reflected on the past three nights. I'm glad they're in the past. I want to forget about them but the lessons will be remembered.

My pain is now under control or else I won't be writing tonight.  It's funny but I am relearning to walk properly. I have to wear compression socks on both legs as they have swelled up. They also give me some sort of control when I walk; my legs are still wobbly. Nausea from the chemo had been common but that's the least of my concerns. This time, it's about getting my physical strength back to a place where I can walk and build up my legs' strength.

I've experienced some pain I cannot described, it felt like my whole body was being attacked with extreme pain that no earthly highfalutin words exist to describe them. At that dark moment, I cried, I complained, I snapped at everyone, I even thought it was the end, but I didn't forget His name even if it was the faint "God help me. I trust you have a plan."

Tonight, I ate fair, my parents visited and I saw relief in their eyes.  At dinner time sharing my tray of hospital food, Kepi and I laughed at some of what happened. I said "some" because most the happenings of those past nights were traumatic.

I am still here.

Thank you God and the Angels you sent on floor 5A. 


  1. Oh wow just reading about your ordeal made me tear up. I admire your strength and bravery! Keep the faith, girl!

    I know about compression socks as my sister had to wear them when she had her surgery. If I remember correctly, it was quite difficult to put on as I needed to constantly pull it up to get it fitted properly. I worked up quite a sweat doing it for her. Of course, it was nothing compared to the pain she was experiencing from the surgery.

    Anyway belated happy birthday, Karen dear. Here's a to a new year filled with hope and full recovery. *Hugs*

  2. That's lot to take in...but you're such a strong woman and I admire you for that. Your faith will bring you better days. Take care.

  3. sending you loads of healing vibes and the kitties all their healing purrs. too much to take in right now, but hold on to that faith. hugs.

  4. Big hugs Kayni! :) You're getting there... I'm praying for your fast recovery. Delirium you mentioned had me remember my childhood friend's experience almost 15 years ago. And I was smiling because she's had a long way now, recovered and having a grand 2nd chance on life.

    Continue to bask in the glory of God's love for you and your family. You're strong, you'll make it. :)


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