Thursday, January 30, 2014

A Reflection On Day 0

It was a foggy day in Baltimore and it was my birthday.

We were at the hospital waiting. My nurse came in once in a while to update us. Kepi, Mom and Dad were there. The cells are coming in by plane and it should be around 2:30 PM (ET). My nurse was a bit worried because it's too foggy and he was concerned if planes can even land through the thick fog.

I was worried.

But by 2:30 PM, the courier, a woman with disheveled hair, arrived. She said that she had to rush the cells as soon as it arrived. I was grateful and I told her, "Thank you."

The bag was huge, bulky and heavy. As you can see (photo below), my nurse had to reinforce the way it was hung because it might fall. The bag was pumped from 2:30 PM to 4:30 PM. It was a long day. It was a long life-saving day.

Before Day 0 or Transplant Day or my transplant birthday, I was nervous (scared) that my donor might back out. But my faith in man was restored and that there are some people out there who are unselfish and dedicated to save their fellow men.

To my donor, I can't possibly describe how grateful I am. My feelings were indescribable that I was in tears when your cells were pumped into my system. I know there are other obstacles I have to go through such as engraftment, infections and graft-vs-host disease, but with your gift of life, I know I can make it through anything. You have given me a feeling of hope and courage. Again, thank you. My family thanks you.

I hope that what you did would encourage would be donors especially in the minority communities.

I hope we can meet soon. If the slipped rumors are true at the hospital, it would be lovely to meet you in the islands of Aloha, my home state. It might have been fate that I am forever bound with these beautiful islands. If the rumors are true, then I have a second Ohana (family) in Hawaii.

Mahalo nui loa. (Thank you very much.)
Ke Akua pu a hui hou. (God bless you and see you later.)

Thursday, January 23, 2014

The Day I Lost My Hair

Today, I shaved my head bald.

The past few days have been routine check-ups and making sure my body is getting all the meds and nutrients it needs. Since my immune system is totally out, I am on several antibiotics keeping my body safe for the time being; I have a lot of meds and they're for anti-rejection, anti nausea and more. I also have to wear a heavy respirator and surgical mask whenever I'm going around the hospital. It's hard to breathe in those masks and that's one reason I'm out of breath most of the time when we're out walking.

In addition to crazy masks and meds, chemo's side effects have started to show. Chemo does a lot of crazy things to your body. My skin is so dry and no matter how much lotion I slather, my skin still comes out flaky. My skin pigmentation is darker now, and most recently, my hair has started to fall off. This morning, I actually panicked when a bunch of my hair came off while showering. I screamed and Kepi had to come check on me if I was alright. I was upset and scared.

Kepi and I decided it's time to get it shaved to avoid another incident tomorrow morning. There's a salon that offers complimentary haircut for patients at the hospital. We called them up and they got me in at 2 PM.  Right after my doctor's appointments, we headed straight to the salon.

I was close to tears while my head was being shaved, but I decided not to. I thought this is a beginning, a phase of letting go of the past and putting my feet forward to a better future. My hair falling out is a symbol of my disease leaving me. A new and better hair will replace the old - a new, healthier life will replace the old.

All this hair came off today.
Kepi and I bought two hats - one for sleeping and one for outdoors. The ladies at the salon were really nice and helped me fit a few hats.

I am still getting used to my bald head and I know I'll be ok. It just takes some getting used to.

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. 

Wednesday, January 15, 2014


Good Day All:

The last couple of days, Kayni has been in a lot of bone pain - serum sickness caused by the ATG treatment.  I took her to the hospital around 2 AM on Monday.  The steroids that were helping Kayni manage the pain had to be stopped (as anticipated) so that the two-day post-transplant chemo will be given a chance to kill any of the T-Cells on the donor's bone marrow that can cause graft-vs-disease (GVHD).

The doctors and nurses have been great.  They have been providing medicine to help calm the pain, though the medicine only masks the pain, it is still there.  It has been sleepless nights for her even with a 24 hour PCA - narcotic as pain occurs (push button).  For the most part, the nurses and doctors who continually came into her room and to monitor her vitals were a great source of comfort and support.

The steroids will start again tonight so Kayni should be much more comfortable. I am hoping that by tomorrow she'll be back on her feet.  Sleep should come easier for her tonight as she won't be constantly fighting off the pain.

That is all I have for right now. I need to get back to Kayni at the hospital.  Please keep her in your prayers, thank you All.


Friday, January 10, 2014

The Last Few Days

Kepi here…

The last few days have been rough going for Karen.  The effects of the ATG have started to kick in, night-sweats, hives, nausea, lack of energy and the occasional fever.  I have been monitoring Karen's temperature and making sure she is well hydrated and is eating.

Yesterday was her full-body irradiation.  This was done, basically, to prepare her bones to receive the new bone marrow.  The Radiation Tech said that she wouldn't feel anything, but I swear that she did.  She could feel the radiation going through her and tracking along her body.  She had a couple reactions to this treatment, more nausea and what she said felt like a sunburn.

Tomorrow is transplant day, day zero.  This has been a long awaited day and we are anxious and a little scared to proceed.  We know the transplant has been what we have been waiting for and looking forward to, but now that it is here, it has really become reality.

The bone marrow will be done via her Hickman port in IPOP (Inpatient/Outpatient) and should take about 4-hours.  We just want to take a quick moment want to say again how thankful we are for her donor, though we don't know who he/she - he/she is a God-sent.

Post-transplant we will have a couple days of rest, where we will go to IPOP for routine blood tests, these are days 1 & 2.  They will provide Karen with platelets, blood and whatever else she needs during that time depending on what her blood counts are and any reactions she has to receiving her new bone marrow. On day 3 & 4 she will receive more chemo to help her new bone marrow become engrafted.

Sunday, January 5, 2014

A Summary of Negative Days

Tired is the word lately.

Here's a summary of the past negative days:

Day -8: Second round of ATG (six hours infusion) resulted with joint pains and congestion. It was still manageable, but the evening was nightmarish with sweats and hot flashes all over my body.

Day -7: On the third and last round of ATG treatment, I was confined on my hospital bed most of the day.  Chills, fever, headache and stingy eyes kept me company. I slept most of the time. It was around 3 PM that I felt fair enough to move around the hospital and walk around my hallway. My body felt like a heavy brick. I thought I won't make it.

I was supposed to be transferred to IPOP/HIPOP (outpatient chemotherapy treatment), but Dr. B decided to keep me one more day at the hospital. I ate fairly today but my taste buds are starting to change.

Day -6: Woke up feeling better. Night sweats and hot flashes kept me awake most of the night, but to my surprise, I was well enough to sit up and eat breakfast. Dr. B came early and decided to start chemotherapy right away so that I can be transferred to IPOP/HIPOP the next day.

Chemotherapy went well. I am more worried about the ATG side effects - red, throbbing hands and feet, rashes around my back and my eyes are sometimes blood shot.

At around 2 PM, Dr. B signed my papers for IPOP/HIPOP transfer. With a big smile and a heavy duty filtering mask, I walked out of the hospital to our Hackermann housing. Hackermann provides affordable housing to cancer patients in treatment; the housing is just a 10-15 minute walk from and to the hospital and is accessible by a bridge. It's very convenient and highly recommendable.

Day -5: Today, my eyes were red and they stung when I woke up. My hands and feet were so red, swollen and throbbing. It's our first appointment with IPOP/HIPOP, so I was hoping they have some remedies for me. When we got there, Dr. B suggested steroids and Benadryl; they seemed to work but temporarily. Dr. B said such symptoms are expected but they'll only go away once the ATG is totally off my body. Water, water, water…drink lots of water.

Chemotherapy went smoothly.

This afternoon, we're bringing over my parents. It would be nice to have some company.

*It's a cold, bleak and foggy day in Baltimore. I hope the outside world is keeping warm.

Thursday, January 2, 2014

Day -9: One of Three ATG Treatments

After spending New Year's Eve with my parents, it was around 11:30 AM when we left for Johns Hopkins. Admission went smoothly and quickly, my nurse for the day helped me got settled in my room and the blood work began immediately. Since I knew that my first three days will be the infusion of anti-thymocite globulin (ATG), I was really nervous because I've heard horrible stories about allergic reactions to the drug.

I was given pre-meds then my nurse started the ATG infusion at around 5 PM.  She also kept watched every 15 minutes for an hour. I am so glad I did ok with the first ATG infusion. About an hour or two to the treatment, I started having a slight headache but it died down.

ATG infusion was finished at around 11:30 PM. Boy I was so tired, but sleeping in a hospital is not the most restful. I didn't get a decent sleep. Perhaps my body is still adjusting to my new environment in addition to the hot flashes I experienced last night. Nurse told me the hot flashes are common reaction to the ATG treatment.

We're now on Day -8.

As for those asking where to send cards or care packages, here's my address. I would love to hear from you.

Kayni Dacoco
The Hackerman-Patz Patient and Family Pavilion
Room 306
301 North Broadway
Baltimore, MD 21231