Its Day +282!

I am still here. Although I've been so quiet, no news is good news.

There are days I still can't believe I am here.

I've asked my husband, several times, if there were moments during my treatment that he thought I wouldn't make it. He'd say, "No. I knew things will be alright and that you'll get through the transplant okay." That's my husband, between the two of us, he is the optimist. I tend to be the whiner and the pessimist. Sometimes I just whine just because I can. Honestly, after my transplant, I feel like I'm adjusting to a new body. It could just be psychological.

This is my last week with Prednisone. My skin graft-vs-host disease seemed to have responded. I am now only taking the pill every other day, and after two weeks of that regimen, doctor recommended I should stop taking it completely. Prednisone needs to be tapered as it does have side-effects, and I am starting to feel them now. Since the tapering started, I've been feeling crappy, have less energy and sleepy at most times of the day. It's been a rough two weeks. My hopes are that even without the steroid, my skin gvhd will not flare up.

Next week, I'm going to see my doctor for my follow-up check-up. I still have my monthly blood work, but I only see my doctor now every two months. It feels great that my life does not revolved around the hospital and blood work anymore.

I am recovering very well except that I've been getting pain attacks below my right rib. Since my doctor knew that I have gallstones in addition to a "lazy gallbladder" diagnosis before my transplant, she suspects that they're the culprit. She suggested that I may need to get it removed. Health challenges keep coming I tell ya.

Next week, I'll have my lungs tested and will also have an ultra-sound for my gallbladder.

I am not sure when the surgery will take place, but boy I am scared.

Six-Months Post-BMT

"Yes, you can eat seafood and have a beer too!"

Could that be true?

I've been avoiding all alcoholic drinks for the past eight years because of my low platelets; Alcohol impairs the ability of the bone marrow to produce platelets, since my platelets were so low, alcoholic drinks were prohibited. Today, Dr. D finally said I could have one.

Am I dreaming? It's good great news, but I'm not jumping to go have a drink right away. I'm just glad that my platelets are normal. In fact, all my counts are normal and these results are worth celebrating.

My actual visit with Dr. D took place late in the afternoon, but I can't help but start with the good news.

Today was my six-month post-BMT bone marrow biopsy follow-up. The biopsy went well, as I opted for sedation. At least, the anxiety and nervousness were controlled. But even with sedation, when that needle punctures the hip bone, the suction/pressure is still painful. We'll know the results next week; I think.

After my biopsy, Kepi and I had lunch at the hospital cafeteria. I was famished as I was fasting for the bone marrow biopsy. The cafeteria always brings back a lot of memories while I was confined at the hospital... After lunch, we proceeded for my pulmonary function test (PFT). The PFT went well and my lung's performance and capacity are up at 98-100% now. It's a great improvement from my last test taken in March.

My six-month post BMT check-up went well. My back and hip are a bit sore from the procedure, but my heart is truly happy.

Tomorrow, Kepi and I will celebrate - take a trip to Virginia perhaps or go see a movie. It doesn't matter what we do. Today, we're happy.

Aftershocks

There's a lot of misconceptions about my bone-marrow transplant (BMT) and my life after it. Some people I know think it's surgery and that after a BMT everything goes back to normal.

No and No.

It's not surgery, not even close. It's more of a long drawn out transfusion. Heck, it is transfusion except that that bag is filled with blood and marrow. The infusion is long - mine took six hours to infuse. Day 0, referred as the D-Day of transplant, was long and tedious. I spent my day waiting and sleeping in my room. I also had mixed emotions - worry, nervousness, restlessness and fatigue because there's always a chance that my donor would back out. I could only give a sigh of relief when the delivery lady arrived with a huge bag of marrow donation. I was in tears when I saw my donor's bag of marrow. I can't tell if those were tears of joy or tears of sadness. Joy because someone, a complete stranger, donated his marrow for me and sadness because I still couldn't comprehend the magnitude of what I am and are about to go through - which takes us to life after a BMT.

What is normal after a BMT? This is a tough question because in my experience, normal is not "normal" anymore - physically, emotionally and psychologically.

• My skin is dry and my skin gets sunburnt easily due to chemo. I have to wear sunscreen for life.
• My stomach is super sensitive, so I have to be very careful with my meals. I seem to have developed Lactose intolerance. Doctor said my donor might have passed it to me.
• I have a mild skin Graft-vs-host disease.
• I get tired easily. Fatigue is a word I often feel.
• My emotions are on a roller coaster ride. Sometimes I feel happy and out of nowhere, I feel sad and depressed. Fear sometimes grips me. Anxiety comes attacking in the morning, day or night.
• I have no patience and I tend to snap at times.
• I am very sensitive, and there are times I cry for no reason.
• I forget a lot of things. Doctor said it's chemo brain.
• I also suffer from lack of concentration. Reading a book is a challenge now compared to before my BMT that I could seat all afternoon and finished a novel.
• There's a lingering feeling of loss - loss of time, loss of self, loss of who I am and what I want to be.

I am not sure if these are temporary changes or will they stick with me forever.

Day +148: Hoping For Rain

I was hoping it would rain tonight. There was definitely thunder a while ago, but the rain clouds never made it to our area. I'm still hoping we'll get some good soaking overnight.

Prednisone helped quell my skin GVHD for about two weeks. BUT the past two days, there's a bit of a rash that reappeared on my cheeks. It is frustrating that these rashes aren't going away as soon as I want them to be. It's just like today, I was hoping for rain, and rain didn't come.

I feel pretty good overall, but I do keep reminding myself that I have to take things slowly. Recovery from a bone-marrow transplant is not a sprint, it's definitely more of a marathon.

Oh look, it's starting to drizzle.

Day +138: Rainy Days And Steroids

Today, I am day +138.

Recovery is going well except for this annoying mild skin graft-vs-host disease (GVHD). It's mild but the itchiness is annoying. I am not looking forward to the summer heat and humidity because the past two humid days, my skin was so itchy and I was miserable.

Last week, my doctor decided to put me on a low dose of Prednisone to treat my skin GVHD. I've been taking it for six days and it's really helping with the skin rash and itchiness. I really don't want to be on steroids for a long time, as it makes me feel crappy, but since this is a low dose, it's very well tolerable. I am hoping this will really help with my skin GVHD.

Although I am taking a low dose of Prednisone, I've noticed that my vision has been blurry. Also, my head feels fuzzy and heavy most of the time. I am not so sure if these symptoms are from the steroids or just allergies. My major concern now is getting this skin GVHD treated.

Well, it's a short update from me. Most days, I feel close to normal, but I am taking things slowly. My hair is slowly growing, and my appetite is slowly getting better. Although there are many things I can't eat yet, I am happy that my taste buds are almost back to normal. Life can be miserable when your taste buds are out of whack.

It's rainy. No matter what the weather's like, I am thankful.

Today is a good day to bake some Chocolate and Apricot Squares.

Of Home And Sampaguitas

Read my latest update HERE.

Thank you for reading.

Steve

We were driving to Mt. Airy to check out a yard sale when Mom got a call.

"Steve died last night!"

We froze. Mom was speechless.

We met Steve and his wife, when I was getting chemo at the hospital. I was in the midst of my treatment when he started his. At that time, we were both getting a bone-marrow transplant (BMT). I was being treated for Aplastic Anemia and he was being treated for MDS. I think our families bonded because we were all going through a difficult journey. While I was quarantined in my room, my parents would spent hours chatting with Steve's wife.

Although our families have not kept in contact since I was discharged, aside from the occasional short talks when we ran to each other at the hospital for our weekly check-ups, the news of his death plunged a deep dagger of pain and sadness in my heart. Perhaps because I have an idea of what he went through especially that our treatment were similar. Perhaps because I know that surviving a bone-marrow transplant process doesn't guarantee full remission. Perhaps because I understand that we're here for just a short time and anything, I mean anything can happen from this moment to the next. Perhaps because I realized that for anyone who faces a life-threatening disease, death is a possibility.

I don't remember when, but the last time I saw Steve was when he was standing in front of the pharmacy waiting for his meds. He looked well and strong. I was chatting with his wife at that time and he looked like he was on track to full recovery. According to his wife, Steve survived prostate and stomach cancer. The MDS was caused by the harsh chemotherapy treatments he received for both diseases.

Steve is a true survivor. Having survived two cancers, he didn't concede to defeat. While going through chemo, he and his wife were inseparable. He'd go to the grocery store wearing a mask with his wife. He was strength in times of weakness.

We meet people for a reason and purpose.

I saw him as a symbol of strength and survival. He neither let cancer rule his life nor take his will to survive. He kept fighting until the end.

I pray for Steve and his family. That they may find comfort and strength in this difficult time.

Today, I am +126 days old from transplant.

Day +120: Biking By The Bay

My latest update HERE.

Thank you for reading.

Hello Spring!

Read my latest update HERE.

Day +99: Easter

Happy Easter!

There are no coincidences!

I'm exactly +99 days today and it's also Easter. Easter is a day of rebirth, renewal and the beginning of a new life. Going through something traumatic, such as a bone-marrow transplant, this day is symbolic and auspicious. Through my donor, I've been given a new life - a second chance to be with my family and friends. Through Easter, we remember Christ's resurrection from death; through Christ's death we were redeemed and by this resurrection we are given hope and strength. I am not trying to be preachy, but all of these, Easter, +99 days and spring, are bringing a deeper personal meaning to me.

In retrospect, I am beginning to understand that being given a new lease in life, I am more appreciative of every morning I get to see the sunrise, get to be with my husband and family, enjoy sipping a cup of tea even on a grey and rainy day, love the smell the fragrant flowers blooming on our backyard and more.

Coincidence is just a word and it has lost its meaning to me. Tomorrow, you'll better understand why I say that.

Day +68: Thoughts

And the sun came out...

It's been cold and grey the past few days. I've been missing the warmth and light of the sun, but today, I'm so happy because the skies are blue and the sun shone all day. The trees are still bare, but after a cold and menacing winter, hope springs eternal - the Cherry Blossom on the front yard is full of buds.

Sometimes, I still wonder why "this" happened to me, but I know now that, that is a useless question. During my hospital stay, I've seen children as young as three getting chemo and radiation and the elderly going through the same process I went through. I mean, what did a three-year-old do to deserve and endure such pain and suffering? I've realized that it is not the things we do or believe in that cause these things, but suffering as well as happiness are a part of life. Without both, life won't have meaning at all.

Every person's journey is different.

Home

And though you can't see, it's so hard to believe it

Sometimes you just need a little faith (All you need is a little faith)

There's an answer to your prayer

And I swear that there'll come a day

The sun will rise

It will be alright

Yesterday, my Hickman Port was taken out. I feel like "myself" again. I mean, who wants a tube inserted into their body. It feels uneasy, foreign and unnatural. Although I have to say that it saved me from a lot of painful needle pricks. Uneasy and unnatural it may seem, my port saved my life especially when I was being transfused twice a week.

I am writing this post at home. Yes, I am home.

My doctors signed my discharge papers on March 7th, Friday, and I also went through another bone-marrow biopsy for the nth time. We were required to attend a discharge class so that we'll know what to do especially that we'll be on our own once we leave the hospital. We'll be transitioning to outpatient. 

Excited as I may to finally go home, it was also hard to leave all the wonderful doctors and nurses who have cared for me and who always wore a smile to cheer me up. I do hope they know that I am thankful and I appreciate all they do.

Physically, I feel ok. I get tired easily. Eating is still a challenge. I've also have a hard time sleeping. I have to avoid sun exposure between 10 AM - 4 PM and should wear sunblock when I'm out. I suffer from dry mouth all the time, and my doctor said it's caused by chemo combined with all the meds I'm taking. I do have a rash that appeared on my right cheek. My doctor thinks it's a combination of dermatitis and mild graft-vs-host, so we'll just have to be vigilant and watch it.

I am slowly easing into my home life. Funny but I have sort of forgotten where things are. It's a struggle to even remember where I've put my ring, my phone, my bath towel etc. I even struggle at times to find certain words to say. Could this be chemo brain?

Most of the time, you can find me playing with washi tapes, papers and labels.  I just revived or reopened my Etsy Shop so crafting is keeping my busy.

Overcomer

Time flies! I can't believe it's March already.

I know a lot of things have changed.  Pre-transplant, I thought that was "it". You know, the "end." Now, I could see hope and future. It may be premature to say such things since I am only on Day +52, but I am feeling a lot better physically and emotionally. Of course there are days my fears swallow me and send me to depression, but I try my best to fight back.

This Friday, March 7, is a big day. I will have a bone-marrow biopsy and have my hickman port removed. I am both nervous and excited about going home. I will truly miss my doctors and nurses on the fourth floor, as my care will be transferred to my primary oncologist. I won't be on a 24-hour watch anymore, so this will take some adjustments when I'll get settled at home.

I used to be better with words, but these days words fail me and I'm better at bottling my thoughts inside. I don't know if it's the fear of opening or being misunderstood. I guess I'll have to sit tight and wait for words to flow naturally once again.

And to anyone who is going through the toughest times of their lives, this song is for you.

Day +48: Seven Days To Go

At last, some good news!

My nurse practitioner came today with some good news. My viral infection is gone, and that I can go home on Friday, March 7. My husband and I were relieved and elated.

Of course there's a catch, there's always a catch.

I have to go through another bone-marrow biopsy; I think this is now my 10th biopsy. I did asked to be sedated though. In addition, they'll also "take out" or should I say "pull out" the hickman catheter on my chest. I'm a bit nervous about how they're going to pull this catheter out. Just thinking about it makes me shiver.

Today, I start my countdown. Seven days to go.

Day +46 Update

The past few weeks were uneventful and we like it that way.

Every single day has been routine blood work and just keeping up with my meds.  Sometimes, I feel like a dog on a leash that all my activities are either restricted or controlled.  Boredom is starting to get me as we do the same thing every single day. I try not to over think the routine. I just close my eyes and put one foot forward and hoping the rest will follow. I know the weariness is also getting to my husband. We both want to go home.

Last week, I caught a viral infection and had fevers and chills for about two days. It was so uncomfortable especially the night sweats. I'm really impressed with my care team at Johns Hopkins; they work fast and efficient. The same day I reported a fever, my nurse took blood cultures and the lab techs identified the virus right away. My doctor prescribed an antibiotic and the fevers and chills were gone the next day. I am really amazed how bone-marrow transplants have evolved these days. I do hope this program at Johns Hopkins will keep improving.

Apart from the boredom and routine, I am quite happy that my donor's bone-marrow has engrafted. I am thrilled that I am now producing my own blood. My doctors said that my bone-marrow is still a "baby" so I should give it time to grow and reach its potential.

I think things are starting to look up.

Valentine's Day

Happy Valentine's Day, Kayni!

Those were my husband's first words of the day. No cards, no flowers and no presents, but they're the sweetest words I've ever heard.  My husband, family and friends are my wonderful gifts this Valentine's Day. They've been my support and source of strength.

I give most credit to my husband who's been with me every single day, 24 hours each day since I've been admitted for my BMT.

For my husband, you're the sweetest and best husband one could ever have.

I LOVE YOU! You are my Valentine - always!

(Photo Credit: http://www.cudsly.com/)

To the few who still read my blog, thank you and Happy Valentine's Day!

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.)

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.

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.

~~0~~0~~0~~

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.

~~0~~0~~0~~

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. 

Steroids

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.

Jeff.

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.

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.

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