- My lip does not hurt.
- My white counts are going up--eventually my body can fight it off.
- Its in a really sensitive area, and will hurt, and may be difficult to heal.
- Its essentially creating a new wound where there already is one
- The new wound is in an area really prone to infection.
- I don't want to end up worse off with a wound that makes it even harder to talk or eat.
Friday, February 27, 2009
Day 21 & 22 (Thurs and Fri)
Thursday, February 26, 2009
Day 20 and 21 (Wed & Thurs)
Wednesday, February 25, 2009
Day 19 and 20 (Tues, Wed)
- I spend more time with a fever than without one and have been up to 102 several times.
- I spend more time with my eyes closed resting or sleeping than open.
- I feel a little delirious or exhausted all day.
- I have a new rash, though at least it doesn't itch.
- My lower lip is still infected and swollen,
- It hurts to swallow.
- I have almost no energy.
- I am wallowing in a sweaty bed (from the fevers) but have too little energy to shower.
- I have little interest in food.
Tuesday, February 24, 2009
Days 16 - 19 (Sat - Tues)
Saturday, February 21, 2009
Day 15 - Friday
Friday, February 20, 2009
Day 14 - Thursday
Thursday, February 19, 2009
Day Thirteen - Wednesday
Wednesday, February 18, 2009
Day Twelve - Tuesday
Tuesday, February 17, 2009
Day Eleven - Monday
Monday, February 16, 2009
Day Ten - Sunday
Sunday, February 15, 2009
Day Nine - Saturday - St. Valentine's Day
Saturday, February 14, 2009
Day Eight - Friday
Visit with Dr. E
My Doctor only gets a few minutes to see me on her rounds, and is out of town at the moment, so its sort of strange, but you don't get that much time with the main person overseeing your care. However, in the Bone Marrow Transplant ward there is a doctor on the floor who happens to be a bit of a specialist in APL. I got the chance to talk with him today, and learned a lot.
- No one knows why you get APL, but its not genetic, so family does not need to test for it.
- It's not infectious--no one I come in contact with can catch it from me.
- There is nothing that I did to bring it on--it just happened.
Cookies
Friday, February 13, 2009
Press Secretary 4 (Final?)
Hello, Everyone!
I'm sure you've all heard the news that Adrian has started a blog about his experiences in the hospital thus far- so now you can get your updates straight from the source at http://adrianhasapl.blogspot.com/ .
(Perhaps we can get him to post a pic of his newly shaved head... For those who remember the driver's license pic with the long hair and full beard it might be a fun compare and contrast type thing.)
Jen's mom is staying through until next Saturday so things are covered at the house for the next week. Once Mrs. Z goes back to Jacksonville and Jen has a better handle on what she might need help with I'll be sure to let you know.
In the meantime, enjoy the blog- updates, insight, education and a plug for MonsterQuest (a show I've never heard of, but now HAVE to watch!)
Day Seven - Thursday - So the Blog Starts Here?
Tuesday, February 10, 2009
Day Five - Tuesday
Press Secretary 3
Hey!
Today was the best news so far. Adrian is feeling much, much better and gets to stay in room #3785 on the Bone Marrow Transplant Unit. (Best place to be according to Jen and Susan- and Susan says the nurses there are awesome.) He's still on oxygen, but it's a lower dose than before. And he's eating again, so- yay!
Adrian and Jen met with the chemo educator today and got lots of good information on his subtype of Acute Myelogenous Leukemia (called Acute Promyelocytic Leukemia). Jen came away from it all feeling very positive, so that's a good thing. She also learned that if he reacts well to the treatment this month, Adrian's next 2 chemo doses could be administered in the hospital (a week-long process), but recovery could be at home.
Adrian actually started part of his treatment on Friday- a regimen of pills he'll have to take for the next year after the chemo- and started the main part of the chemo this evening. I believe the expectation is that he'll continue to feel good for at least 2 days and then the chemo kicks in. Will keep you posted on how that goes.
I think that's all for now. I did chat via the internets with Adrian this evening and he sends a big thank you to everyone for support, prayers and general happy thoughts. He's is a great mood and even shared this fun factoid: thanks to the chemo he has to flush twice so no one gets irradiated from the splash-back. Who knew?
Hope everyone is doing well and I'll let you know when I learn more.
Of course, any good Anti Splashback deck should have a few Swirl of Protections.
Day Four - Monday
Monday found me in new places...
Fluid on the Lungs
Monday, February 9, 2009
Press Secretary 2
Hey!
Adrian was moved to the critical care ward this afternoon- which sounds bad, but is really a nice thing for him. Evidently the specific type of Acute Myelogenous Leukemia that he has is relatively rare and his complications were unusual for the nurses assigned to the floor he was on. Anyway, the bottom line is that he's being treated and is feeling better this evening. As an added bonus his new room has windows with a view of the lake. He and Jen both hope he gets to stay there. And Jen thinks that Susan will still be his dietitian- another bit of good news.
Because so much changes throughout the day I thought it might be easier to just send one message in the evening that sums up whatever may have transpired throughout the day. I'll try to keep you as up to date as possible without flooding your inbox each day.
Both Adrian and Jen appreciate all the offers of help, kind words and well wishes and will know they have friends just waiting to step in when needed. Jen's mom has decided to stay through the week and is helping out at home.
I think that's it. Hope you all have a good night.
Oh-with all the shuffling around today I don't know Adrian's new room number but will share when I do.
Day Three - Sunday
Sunday, February 8, 2009
Press Secretary 1
Hey, Everyone-
I know many of you have expressed an interest in visiting Adrian while he's in the hospital and were just waiting for the all clear. Jen would like for you all to know that, unfortunately, visitation is going to have to wait a little longer. The doctor didn't prohibit visitors, but strongly discouraged them. Adrian's immune system isn't up to par and the risk of infection is too great. That said, people with young children were "strongly, STRONGLY" discouraged from visiting right now. In addition to all that, Adrian has said that he just isn't up for people right now. He's exhausted.
As soon as the doctor says it's okay and Adrian is ready for friendly faces I'll be sure to let you all know. In the meantime, he does have his laptop and I think he has (at least occasional) internet access. Though I'm not 100% certain about that- and even if he does have the ability to check email he may too tired right now to check/respond.
Oh- and he's at Florida Hospital's main campus on Rollins.
Jen's mom is still in town and will be helping out at the house for a bit longer so everything is being taken care of for the moment.
That's all I have for now. Will be certain to keep you posted.
Day Two - Saturday
Saturday, February 7, 2009
Day One - Friday - First Night In
Thursday, February 5, 2009
Introduction
All,
I got some bad news today and thought you all would like to hear it from the horse’s mouth—so to speak.
I probably told you that I have gallstones. Well I had surgery all scheduled and during my pre-op tests they discovered I had “critically low” white and red platelets—too low to operate.
Surgery was cancelled and off I went to a hematologist/oncologist to figure out why.
I got my diagnosis today, and discovered that I have what is the perhaps the mildest form of Leukemia. The good thing is they caught it weirdly early—before I even showed any obvious symptoms. However, it’s a serious thing, and needs to be treated immediately.
On Friday I will be going into the hospital to start treatments. Treatments consist of medicine and chemotherapy. I will be in Florida Hospital for 21-28 days, go home for a week, then back in to Florida Hospital for the 21-28 day medicine/chemo thing -- two more times.
The treatments have a high success rate of 75% complete remission.
So there it is.
No need to spread it far and wide, it will all come out over time to people who are interested and I don’t want to make a huge deal out of it. I just thought you’d all appreciate hearing it from me.
All of you will just have to survive without me for a bit—but not to worry, I’ll be back in a few months.
All the best,
Adrian