Still running a fever and trying to determine the cause or for it to resolve itself. Still waiting on all blood counts to show a consistent upward trend.
Ever had a zit surgically removed? Well I have.
About five days ago I developed a pimple at the base of my neck, right above the sternum. Well a good part of this week my blood counts have been low, so rather than healing the zit had become raised and inflamed.
The doctors were concerned the spot had become infected and might be a source of my fever. The doctors initially thought a biopsy would be a good test but my platelets were to low to consider doing in my room. So, they decided the best thing to do would be to take me to the Operating Room, put me under, insert a breathing tube, put me on a ventilator, open the area and clean the area, then pack it with gauze, tape it, remove the breathing tube and then bring me back to consciousness.
And that is just what they did this morning. They surgically removed my zit.
And they are testing everything they cleaned out of there for various infections.
And I got to take another trip to the Main Building. Woohoo!
Last night Mr. Heath and his wife came to visit. It’s really been too long since we’ve seen them. So, it was a great visit and good catching up.
Right before they left Mr. Heath did me a huge favor and shaved my head. I have mostly worn my hair longer. I have not ever cut it short enough to see the shape of my head. I am pleasantly surprised that it doesn’t look too bad!
And no, there are no pics to post yet.
The last two nights and days I have ran a fever. Strangely at 4:00 am the last two days my temperature dropped to 98.6. Unfortunately it rises back up.
The concern is that the fever is due an infection. A likely candidate is sinusitis as my sinuses are full. They are still checking other possibilities though. All is being checked. Meaning they are taking lots of blood cultures. Sometimes it seems like they give me blood just to take it away again.
In spite of my concern about my temperature I still feel pretty good, aside from one lingering mouth sore, sinusitis and cabin fever.
I take 900 pills each day. Get 900 antibiotics dripped into me each day. Apply 900 creams and ointments to my body. Get 900 examinations a day by doctors and nurses. They all ask the same 900 questions. They take my vitals and weigh me 900 times.
Okay. I might have embellished the numbers. But you get the idea. It “feels” like 900 times.
Here is what is new with me.
– After three weeks, more or less in bed most of the time, I feel a little weak on my feet. I am getting a physical therapist and an occupational therapist.
– My blood counts are all still very low. In fact I am getting two more units of red blood cells today due to an excessively low hemoglobin count. There is a chance I will need platelets tomorrow. I am so ready to be independent on the this blood thing. Come on bone marrow!
– If everything goes as expected I could be discharged from the hospital on May 1st. That would be wonderful. Of course this all hinges on my bone marrow responding correctly to the treatment.
– Lastly, my hair around my hairline comes out by the fistful with great ease. You know, aside from the smoking, I always thought Yul Brynner was way cool 🙂
I got to take another ride to the Main Building Radiology Lab. This time for a cat scan of my head. To check my sinuses. Seems kind of extreme, huh? Well when the risk of infection is this high, no one takes chances.
This time the ride was in a wheelchair. Not as much fun as a big bed but, hey, at least the porter was a cute girl 😉
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 🙂
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 🙂
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.
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.
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.
I am naming her Ally. To me Ally sounds nurturing. When I go to sleep I feel good saying, “Good night Ally.” Like I am going to be taken care of.
Mind you I like the Laura 5000 picture as much as the next guy. But it does not have that same nurturing effect.
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.
Well as expected and desired my white blood cell counts are dropping. To give you some perspective, if I were healthy, my white blood cell count would be between 5 and 10. Yesterday it was 4. Today it is 1.9.
Yesterday I still felt really good (C-Diff aside). Today I am really, really tired.
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!
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.
Okay this ol’ girl is attached to me 22-1/2 hours a day via my PICC Line. I figure if I am going to hang with anything that damn much, it should have a name. Can you help me name her?
Just put any suggestions in the comments. Thanks!
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 🙂
Yesterday my daughter said, “Hi Daddy”, then asked, “In a crib Daddy?” Yeah, it’s like that 🙂
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.