Year: 2005

Wheeeee!

For the “How are you feeling question?” My mouth still hurts but is feeling better. At least I ate more today. And I am not 100% steady on my feet. But good enough to get around my room and take a seated shower 🙂 I also have some congestion, so my main doctor ordered a chest x-ray. I had a chest x-ray done in my bed in my room since I was moved to the oncology floor. So, I figured that is what they would do again.

BUT! I got to go on a big adventure. I was wheeled to the main hospital building radiology lab! It is a couple of blocks away but connected by a tunnel system. I got wheeled there and back in bed propped up. It was awesome! It may not sound like much to you, but consider I have been in this building and mostly my room and mostly my bed since April 2nd. It was nice to get away from the oncology floor even if only for an hour 🙂

The Next 48 Hours

I am pretty much at the height of the affects of the chemotherapy: neutropenic (no immune system), weak, tired and nagging aches and pains. In the next 48 hours I might start new cell growth. That means I will start feeling better. Until then I intend to lay low and rest. This means I might not be on for instant messages and might not update this blog for a few days. But I am still here resting, getting better, putting this thing into remission 🙂

Pain in the Mouth

One of the common side effects of chemotherapy is a sore mouth. Today has been the worst for my mouth. The gargles are okay but not quite enough to eat. Supposedly this should get better soon. It was constant pain so I had to call for pain medication. I got codeine.

Today my hemoglobin count is low so I am getting a red blood cell transfusion today. Red blood cells make me feel a lot better. Go vampire! This morning before the transfusion, I thought I would try and take a shower since I was unhooked from the IV pole. I was a little tired standing up but not short of breath. Anyhow I got into the hot shower. Bam! Almost immediately I started to faint. I grabbed the rails and lowered the seat in the shower and sat down. I just could not recover any energy. So I shut the shower off, threw a towel in my lap and pulled the nurse call cord. Embarrassingly I had to be wheel-chaired back to bed 🙁 Moral of the story? Don’t take a hot shower when your hemoglobin count is low!

So back in bed, I was embarrassed, mouth hurting and ready for transfusion. Once the transfusion started I went to sleep. A good, deep sleep too. When I a woke I saw I had a visitor. This vistor was a big surpirse. My friend David from San Francisco! Based on the day I had been having, from his perspective he probably wishes his timing was different but from my perspective his visit really lifted my spirits and could not have been timed better.

Blood Count

Yesterday my white blood cell count was down to 1.8. The previous day they actually went up in the 2s. Which I was told is statistically insignificant. Meaning we are still on track. In fact, I also learned that with my classification of AML (M3 or just APL) the white blood cell count does not always zero out and that is fine. The important thing is new cell growth. So we are still on track and still on watch 🙂

Come on good bone marrow and good blood cells!

On the other blood counts, my hemoglobin has been holding steady a few days so no need for a red blood cell transfusion. However my platelets were low so I got a precautionary bag of platelets yesterday. Oh I feel like such the vampire.

How are you feeling?

I get asked how I am feeling about 20 plus times a day. I get asked by doctors, nurses, patient care technicians, visitors, family, online friends, etc. The nice thing is, it is sincere. Unlike the average walking down the hall at work, “Hey man, how are you?”

For a guy in the hospital for one month getting treated for Leukemia, my answer has generally been “good”. But this morning just sucked. My mouth hurt and bottom hurt even worse. I bitched enough that I finally got some products to feel better. And so, the day got better. I feel pretty good again.

Well all modesty is lost too. The staff asks about all output and input. How much did you drink? How much did you eat? They chart it all. Making sure I am hydrated. Making sure I am not retaining water again. Oh bother.

They check my vitals. They check my lungs, my breathing. My mouth, my skin and my legs and ankles. Do you have a rash? Have I become a horse???

So feel free to ask me how I am feeling. Yeah I hear it all the time, but at least I know it’s sincere.

Burning Man

If you know me or have been reading this blog, you know I was excited as I could be about attending Burning Man this year. Unfortunately, my recovery plan for leukemia is not going to accommodate going to Burning Man this year and perhaps not next year either.

A major part of my treatment is taking ATRA (Retin-A) for I believe the next two years. Sun exposure and Retin-A do not mix. Thus, a week of extreme desert camping is not in my best interest.

So, I now have two tickets I can sell. If interested contact me.

What C-Diff Means to Me

Basically, C-Diff for me means I have to run to the bathroom at any moment. We have all been there. It is not fun, but not that bad. It is a little worse when it occurs in your sleep. Still manageable though.

I have to tell you though, running to the bathroom from a dead sleep with an IV pole in tow is a whole new deal!

Clostridium Difficile

Through out my hospital stay I have been blessed with a number of great visitors. Soon this has to slow down if not halt altogether. Two reasons:

1) Today I tested positive for “Clostridium Difficile” or “C-Diff”. Basically this arises after taking antibiotics for a long time thus killing not only bad bacteria but good bacteria too. The solution is that they have changed my antibiotics. However, I am now a risk to visitors and the staff. So the staff has to gown up to work with me and visitors are not allowed physical contact. No hugs, no handshakes. Sigh.

2) My white blood cell counts are supposed to drop soon. In fact, they should drop to zero. This will leave me with basically no immune system. Thus I am at high risk of getting infections from visitors.

So visitors are not good for me and I am not good for them. Not sure how long either of these conditions will persist. We shall see.

Another Fine Day

Today has been awesome again. I really feel quite good. About 1-1/2 hours everyday I am free of my IV pole. I like to walk around then, bother the nurses station for socks and the like, sit in chairs, etc. The best though is getting a mask and going outside. Today the sun is out and there is a nice breeze. It was awesome. My wife brought the digital camera up so while I was out I took pictures of textures to use in web design stuff.

Also with the digital camera we took some pictures of my room…and me and my fine daily fashion 🙂

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Yesterday my daughter said, “Hi Daddy”, then asked, “In a crib Daddy?” Yeah, it’s like that 🙂

One Fine Day

So far, I have had a great day on the oncology floor today. Here’s why:

1. I got some pants to wear under my gown. I have not worn pants since April 1st. Woohoo! They call these pants “basements”.

2. I got a breathing mask and walked around outside. I have not been outside since April 1st either. Nice day out there albeit windy. Beautiful all the same.

3. Another AML patient visited me today. They are much further along in their journey and their cancer is going into remission. They brought me a lot of hope.

Thank Yous

While it is certainly not easy to be stuck in the hospital for a month, it is also hard on those who are at home without me. Specifically my wife and daughter. My wife has to watch our daughter all the time, try and help me and run the business affairs of our household. Our daughter is young, misses me and does not understand why I am not at home. For my wife, that is a lot to be hit with at once. She has done a remarkable job.

To help her, the Lake Highlands Early Childhood PTA and our church’s playgroup have really stepped up: making meals for her and volunteering to watch our daughter, so Sarah can get things done. It is really amazing how many people are out there sincerely wanting to help my family. I am so grateful to you all.

Clarification

Okay there have been some questions about exactly what I have. I will do my best to explain it. I am quite dense on cancer and leukemia. Until Friday, April 1st I did not know that leukemia was cancer of the blood!

Okay here goes on what I have (as far as what that means I would check the links from an earlier post):

I have leukemia.
Specifically acute leukemia, not chronic leukemia.

Of the two types of acute leukemia, I have acute myeloid leukemia (AML), rather than acute lymphocytic leukemia (ALL).

There are eight classifications of AML I have: “AML M3 ? Promyelocytic” which is also frequently stated as: “Acute Promyelocytic Leukemia” or just APL.

Hope that is somewhat clearer than mud.

Yummy!!!

I got the most wonderful surprise this morning when Sarah brought me Paciugo. Yummy!

When I first got here I decided I needed to remain positive. As a part of that, I requested comedy DVDs from friends and family. Now the occasionally comedy is alright, but that is not really my style. So I just had to ask Sarah to bring me some movies more to my liking:

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Ah, much better. I guess I am positive if I am watching my kind of movies.

For all of you commenting on my bowel movement remark/entry. Yes, I am regular. Oh and on a related note they are now measuring my urine output. Oh bother.

Some Days Are Just Not That Easy

I woke up this morning to lab services taking my blood at 6:00 AM. That is pretty normal. But this morning they had to stick me three times to get it right. It happens I guess after you have been stuck 900 times in the past seven days. So I got up to put in my contacts and wash-up, and I noticed in the mirror my face is wider. What the? Oh yeah. Steroids. I am taking steroids to counter the effects of the ATRA. Yuck. So with this happy thought I stumble back to bed. Why do I stumble? I have swollen ankles from all the fluids off the IV drips. Meh.

So I talk to my doctors as I do most mornings. Found out I was wrong about the first chemotherapy round. It is actually four doses over eight days. So for this round, we are finished on Monday. Then the fight is on! Out with the mutated cell production in with the new! Then three more rounds of chemotherapy later on. Long road ahead. As for the steroid changes, those should not be permanent. They gave me a diaretic today to start peeing off the fluid retention. So all gets better or right eventually.

Good visit from Sarah today. She has been here for both chemotherapy sessions. It puts my mind at ease. It would be easy to get a little freaked when you know something that strong, that toxic is being dumped in your body.

Typical Day of the AML M3 Patient

In a typical day right now (it is the end of day six in the hospital) I:

– Wake up
– Get vitals taken
– Pray, meditate, look out the window
– Get visits and check-ups from doctor team
– Get breakfast (always has scrambled eggs) and morning meds.
– Watch movie, listen to mp3s, check email, read
– Get lunch (always has macaroni and cheese)
– Take shower
– Walk floor without IV pole connected
– Get IV back in
– Get chemotherapy if an odd number day
– Receive visitors
– Eat dinner (usually has macaroni and cheese)
– Get meds
– Walk floor with IV pole
– Chat online, watch movie, play mp3s
– Go to bed

In some ways it is not bad having some down time in life, and having people wait on you. I will probably change my tune in six more days!

Throughout the day I get checked on by doctors (four on my team), nurses and technicians for vitals and miscellanea. The most common question I get asked? “Did you have a bowel movement today?”