Gird up thy loins!

God, His word, and life.

Strength, Courage, Patients, and Trust

I had felt like crap up until two weeks ago. I was starting to get pretty down, missing my family and home. My wife and son do not get to visit me much because of work and our meager earnings. My strength seemed to be slipping away and my attitude along with it. This started when I developed a nasty rash and itch one night. It was so itchy I couldn’t sleep for weeks. The doctors confirmed that it was GVHD, pretty common thing to have happen after a bone marrow transplant. I admit, I was hoping I would be one of the ones that didn’t get it. I was almost off prednisone, a steroid you have to taper off of slowly over months. The docs immediately upped my intake again setting me months behind. I think the stuff is pure evil. It has a lot of nasty side effects I’d rather avoid and some serious life long complications.

One evening I was sitting in the apartment alone Read the rest of this entry »

Dear Donor…

I received a letter from my donor a month ago. I’ve been seriously procrastinating in replying. My mind has been distracted a lot lately with family, financial, and other issues. She is a little younger than me I think but has at least 2 kids. My donor was a 100% match, in fact she matched everything else they look at such as blood type and cmv level. They handed me the letter in clinic. I put the letter away deciding to wait until I was home before opening it. I didn’t know what kind of emotions the letter might draw up. After I was back at the apartment and things settled down I managed the courage to read it. It was a simple card with a few paragraphs, short and sweet.  In her letter she mentioned a child who had cancer who she cared for as a nurse. It was the reason she signed up to be a donor. She prays and thinks about me often, hoping I have the strength of that little girl. She seems nice, down to earth, but what would you expect! Hopefully I’ll learn more in the next letter.

So… I decided to stop my procrastinating and write back. Finally. It was hard at first. They, the hospital, or registry, does not allow us to divulge much information about ourselves at first. Nothing personally identifiable they say. I tried to write this very personal letter in a non personal way. Dear donor… I decided to tell her about Jan, since she mentioned the young child she cared for who did not make it. Jan was a little boy I met in the Philippines who had cancer. What else? Its hard to know what to write in a dear donor letter. Thank you? Of course, should it be more? or less? I wonder how many people don’t write back at all, or how many donors feel too awkward to write. I guess it happens. My donor probably thinks I’m one of those people haha.. So I guess I should finish it up.

My general average life

For a few months now I have been feeling empty and tormented. I never thought it would be so hard. Home is about two and a half hours away. Being away from my little boy and wife is hard. I miss my general average life. Staying in the apartment feels dark and empty. I’m weak, I have no stamina, and I don’t understand it. Outside my stamina halves. I can go a few hundred feet before I start to feel drained. I needed some medication one day and decided to walk to the drug store. No one was around to take me. So I opened the front door and stepped out, not knowing if I would be able to make the distance. It is about a mile or so. When I made it there I dreaded the walk back. By the time I got home all I could do was lay around all day. It pretty much wiped me out. The next day I was too weak to get out again. Some times I don’t know if I am improving or getting worse. I wonder to myself, when, when will I have enough strength to play with my little boy, to pick up around the house, or to go out on a long walk with my wife and son.

I have been sneaking out of my pin and coming home a lot lately. Today, I canceled my clinic visits and came home. Its too hard for me to be away. I lay awake at night thinking of my little family. Some nights I can’t sleep at all. Everything seems to become dull and greyed. I watch tv, usually the same shows, it all blends in. Not just the tv, but life. Its like looking at everything through a film covered window. I guess that’s partly why I haven’t blogged much lately. It is hard to do anything. My emotions are always up and down. My strength fades quickly rendering me bound to the house most of the time. I don’t know how I’m going to feel physically from one day to the next. I know that I can’t lose my faith. I know that God gives me strength to deal. It doesn’t seem to make it any easier, but I can’t imagine doing this with out Him. For now I’ll hope for better days.

Still kicking

I’ve been out of the hospital now for a few months with only few incidents where I had to stay a few nights. I try to avoid that place at all cost, even to the extent of faking my wellness. I just can’t stand the thought of being stuck in there again. I am really enjoying my freedom right now doing everything I probably shouldn’t including venturing out on my own, driving, etc.. I guess thats why I haven’t blogged much lately. It’s time to get back to it, I don’t want anyone thinking I died already haha, I’m still kicking!

God is really good to me, He’s answered all my prayers. So much has happened since my last post. I’ve had a lot of ups and downs, mostly health complications but the bone marrow side of things has gone extremely smooth. I couldn’t be more thankful. I’ve met people that have had it way worse than me and some that sailed out smooth.

The most notable would be my first post transplant biopsy I had about 6 weeks ago. It came back clear of cancer, and 100% donor cells. Praise God for that. Since release I had been fighting RSV, fungal pneumonia, and a bacterial buildup in my lungs. At the time my lungs were so full of junk I had to be put on oxygen. Eventually I developed Subcutaneous Crepitus. Its basically trapped air from my lungs that escaped into the surrounding tissue. It ended up behind my lungs, around spine, heart, neck, and skull. It even changed my voice for a long time, I couldn’t speak well. They found it when they did a CT scan of my chest and neck. The radiologist wouldn’t let me leave after they did the scan and wouldn’t say why. Later I found out that she had never seen so much air she was amazed I was alive. The doctors didn’t know what to do, they called in a pulmonary surgeon to possibly perform an operation. They gave me a pretty good scare, I prayed hard. When I consulted with the surgeon he said it was not life threatening and I could be released, it would naturally dissipate. Its been a few months since then and I feel most of the air has gone. I also cleared the RSV a few months ago, not sure about the other.

I’ve lost a lot of weight since transplant. There was a time I was down to 158lbs. My appetite is decent but I can’t seem to gain much. When I was released I was about 170lbs or so. I was also extremely weak. Walking up the stairs was really hard, I needed to pull myself up using the banister and both arms. It seemed like every time I was re-admitted to the hospital for some infection I would be weaker on release than I was when I got in. I came to really despise staying there.

God has given me the strength to deal with some pretty serious stuff outside the hospital and I couldn’t be more thankful for that.

…where was my mind.

I started to really lose track of time around Day -3. The nurses just started my last dose of Cytox chemo and would later start ATG and a slew of other drugs. This consisted of steroids, anti-this and that meds for three days. The drugs were numerous, I couldn’t begin to comprehend what they planned. They came in different shapes and packages, 5 little blue ones, 3 little orange ones, 2 big oval ones, 1 little oval antiviral, to name a few. They also came in the form of IV shots, three of which were all anti-nausea drugs. I would receive each shot and pill consecutively. Each would cause an emotional roller coaster that lasted moments to hours on end. My heart would race, then slow down to a small rhythm. Some I could feel go up the veins in my chest, some made me excited, other made me want to sleep. They made my eyes water. They took my vision for hours at a time. I could see but only things, objects. Text was eligible. Read the rest of this entry »

Happy Valentines day!

My hand made valentines card from Netty.

Valentines marks day -6 for me. The day held more Busulfan, saline, and pills as I approach transplant. I haven’t really put much thought in it lately. One of my nurses is really into biology and we talk at length sometimes about cells and things like that. Briefly I wondered what would it be like watching that bag of tcells flow into my line. Is it like putting your hand into a bucket of angry piranha? You know they are designed to attack anything foreign. I dunno, I still haven’t placed much care into it yet. I’m not sure how my view of the actual procedure will be beyond what I already think about killing off my own marrow. I’m still pressing ahead. My counts are starting to spike which means my marrow is forcing all the cells out into my peripheral blood. It should be interesting to see if any leukemic cells surface. If I didn’t pry, I doubt they’d tell me anything. Read the rest of this entry »

Hooah!! Lets do it!

Night -7

Its Day -7. I’ve settled in here and there is no turning back, with out a lot of drama anyway haha… This is my second night. For those that don’t know, transplant day is considered day 0, the days leading up are prefixed with ‘-‘ and the days after are prefixed with ‘+’. Today, they started me off with some anti-seizure medicine and steroids, along with zophran anti-nausea medicine. The steroids is to prevent a lot of long term issues though they also carry their own problems… The chemo can cause seizures so I get the anti-seizure med. My poison is to be Busulfan and Cytox. I’m to get 4 days of Busulfan, then I’ll switch to Cytox for 2 days. On the second day they will start another type of drug called ATG which is like an immune suppression drug similar to chemo. I will take that for three days. The last day will be day -1 followed by day zero which is transplant day. That is the plan. As long as the stem cells come in I should make it, not sure how long I will live with out them, they never really tell you those things. They like to keep you in the dark! I plan on giving them hell anyway : ) Read the rest of this entry »

The lot is cast…

The hardest part about deciding to do the bone marrow transplant is how I feel. I feel normal. I don’t feel sick, I have no symptoms. Absolutely no sign of my disease. It doesn’t make sense. No matter how hard I try, I can not wrap my head around it. I am truly perplexed. Even after my induction I steadily got stronger. Now that I’ve been off chemo for over 6 weeks I feel myself again. I’ve lost a lot of strength, but I feel pretty good. Read the rest of this entry »

The marrow of my bones

The marrow of my bones.

The marrow of my bones is about to be destroyed. I’m not sure how many people really look at stem cell or bone marrow transplants that way. My marrow for me, isn’t simply a substance flowing through my body. Its a living part of me. It is the very core of my body. My marrow gives me strength, blood, energy, and defends me. It is part of my very being. In a sense, to lose it is to feel defeated. Like cutting a limb off. I hate the idea of doing the BMT. I don’t want to, but feel I have no real tangible alternative. I’ve done my research, and made a choice. I don’t feel scared about it. I feel a mixed uncertainty. I feel like I’m going in to have my dog put down. Sometimes I feel like I’m killing that childhood feeling of ‘invincibility’. Will I be the same? Read the rest of this entry »

CMML and you!

I’ve wanted to post something about my leukemia(CMML) for awhile now and haven’t. So much has happened since July that I do not know where to begin or if I’ll ever get caught up. There is little info out there on CMML. Searching for info or someone to connect with leaves me with more questions and no answers. Though I’ve been very positive, I have had a lot of ups and downs. I hope by posting my experiences someone else can find a little comfort and understanding, maybe even some insight.

I’ll start with my cancer history… Read the rest of this entry »