Sunday, January 11, 2015

Tuesday, October 21, 2014

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.

Friday, July 25, 2014

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.

Wednesday, July 2, 2014

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 - worried, nervous, restless and fatigued 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.