I've Got Singles

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Monday, Monday!

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Things Are Looking Up

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First Re-Birthday!

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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

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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

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Hello Spring!

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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!