Day 21 & 22 (Thurs and Fri)

Another day of mending...

Patient Holding

Ah--another reason patient holding seemed sad the night before is that it is a dim room with little going on. I could hear some young nurses talking in the other room, and their conversation was pretty funny and revolved mostly around sushi ("Ya, like I like the kind with rice on the outside.")

But it made me realise that i couldn't do those things right now--and that I was stuck in a stretcher that I couldn't even leave. Very isolating.

But enough self-pity--that's all behind me.

The Lip continued...

So,  my lip felt better in the mask I wore while I tooled around the hospital from test to test. It was like my breath was humidifying it a bit. So I decided to sleep with it. 

If you can believe it my lip was even bigger. 

I'll spare you a picture.

So I took the advice of one of the nurses and gave it some air--no ointments or salves--no chapstick. It was not great, still swollen, but it feels better. Its still awkward to talk or eat--but in general it hurts less--most of the time--if not talking or eating--it doesn't hurt at all.

But it looks bad, so the doctor I called my immunology doctor (who is I think actually an Infectious Diseases doctor--I will call him my ID doctor.)  wants to know what's going on. He wants the fevers to stop. He wants to biopsy this, and he even wants to remove my picc.

My picc does not hurt, my fevers (while still present) are at least less frequent--and my lip--well it doesn't hurt. 

But I recently discovered there are plans afoot for my lip. So the plastic surgeon (the same one who said we should leave it alone) has agreed to lift up the edge of the scab so they can swab it for a culture--i.e. biopsy it.

No one has talked to me about this and its scheduled for Saturday at 9 AMish.  I am not sure I agree. Here's  my thinking:

• 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.

So there it is. They can't do it without a consent form--so I will learn more tomorrow and update you.

The Gall of it All

Another thing that happened today is I woke up with a strange bile taste in my mouth. It reminded me what got me here in the first place--Gallstones.

So I mentioned to my doctor that maybe we should look into that--perhaps some complications with my gallstones was the culprit behind my fevers.

I regretted it almost immediately when I realized it was another day of fasting.  But I'm glad it got checked out. I went back to the Ultrasound room and they checked me out. I will hear more later I am sure.

Reading

Today I read. My concentration is not up for the complicated, but I started with the Tales of Beedle the Bard--which was fun. Jen finished up a Choose your own Adventure book, and after she left I explored other paths (which were quite different).  Silly but fun. I also discovered (I think) that they were resurrected by the original authors. http://www.cyoa.com/

Fevers

While I had some at night. I think I only had one (and maybe a second minor one) today so far!

So a good Friday...

Day 20 and 21 (Wed & Thurs)

It all seemed like it was going to be more of the same...

Wednesday Night Fever

Wednesday night was an unpleasant continuation of the day before. I spent most of the evening with fevers ranging from 100-102 most of the time. Finally just before dawn, when I was recorded at 102.9--the fever broke.

I took the opportunity, while I was 98.7 to have a shower. (When I get out from under the covers I get chills really easily if I have a fever.) I crawled out from my hot moist and sweaty cocoon of a bed, they put a glove on me (a big plastic sleeve that protects the PICC line, so my right arm never gets clean) and bathed.

Hurray! 

The Lip 

Well with one issue mostly solved--the fever--another issue raised itself in prominence. My lip, which has had a sore on it for weeks, was especially swollen. So swollen--it was a little hard to eat or talk.

If it were just a fat lip it would be comical--but it hurts...

You might catch some remnants of my chest rash in that pic too.

Oh you may notice in my mustache/beard that my hair has started to fall out.

How do we solve a problem like Adrian?

My immunology doctor and my main doctor were both concerned with my non-stop fevers so they paid extra attention today. They did not seem too concerned with my nosebleeds (I think I forgot to mention these to you all.) or my leg rashes that were spreading.

They were concerned about my lip. My main doctor called for a plastic surgeon to see if it should be biopsied.  He decided it shouldn't.

They were also concerned about my difficulty swallowing. So they ordered tests. Tests which meant I couldn't eat--so there went the swallowing issue.

The Rest of the Day

Jen visited, which was great as always and we spent some nice time together.

And then I slept and slept. I pretty much slept all day, without a fever. Until...

I Left the Floor

So the tests the doctors ordered at around 8:30 AM did not get followed through on until about 4 PM.  Fortunately I was able to do all three at one time.

They wheeled me off the floor for the first time since I've been here. It was sort of weird--especially since in the last few days I had barely been out of my bed, and not even my room.  Of course the timing was great as I had somehow managed to get another fever of 101.5 (after a feverless day). I felt cold and miserable and just pulled the covers over my head as I was wheeled about.

Echo Test

I was first taken for an Echo test, which is one sort of ultrasound. They wanted to check my PICC arm for clots, and my thyroid, which is where the swallowing pain is. My tech was really nice and I started feeling better during this test. I think my fever subsided.

Ultrasound

Following that, they took me to another ultrasound. I had to wait in patient holding--a room where they can put stretchers and their patients--and I was in there so long I was wondering if anyone knew I was there.

Finally a tech came out and did an ultrasound on my throat. She did think there was some sort of lump on my thyroid. Not sure what that means yet, but there it is.

Impatient Holding

I was put back into Patient holding before my final test, a CAT scan. I was here forever, and started getting sad--just a little overwhelmed with everything. Also, I really miss Anna--its been three weeks since I read her a story for her nap, told I was going to the hospital and would miss her. I have not seen her since.

Its probably best I don't--I think it would just worry her to see me like this, and I will be out of here in a week or a little more I think.  But its still hard.

After what felt like 25 minutes I was pulled in for my CAT Scan.

CAT Scan

I had one of these done before, but that was for the potential of a brain hemorrhage.  These tests were different. They did one of my sinuses, and they did another of my chest with some sort of dye that they inserted through my PICC line.

The CAT Scan device consists of a stretched with a big wheel near your head. The stretcher moves you back and forth through the wheel to examine whatever part of you its trying to. At the same time there are two little faces in the wheel to let you know when to breath normally (a smiling face) or to hold your breath (a face with full cheeks).

Back to my Floor

On the way back to my floor I saw the sun setting. It is the first time I've seen that in three weeks (my room faces east). I was starving when I got back so made myself some PB&J sandwiches and had a little more of that pie.

And now we will see what the night has in store...

Day 19 and 20 (Tues, Wed)

So my Doctor told me that I am at the nadir (lowest point) of my treatment. 

Low

All my blood counts are low still, and the past couple of days have been so hard.

• 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.

Its all very frustrating and depressing--but hopefully will pass soon. I don't get the sense from anyone it will be that soon, but I hope so.

Something Nice

I don't just want to complain so I thought I'd share something nice. Jen has been able to visit and both days read to me. I don't have much more energy than to listen, but it was great. A friend had sent some choose your own adventure books--and they were silly and fun. Seeing Jen is the highlight of my days.

Days 16 - 19 (Sat - Tues)

Things were looking so up...

Routine

Generally my treatment became pretty routine over these several days. I would get antibiotics 3 times a day from my IV but otherwise was unattached. I still took my barrage of other pills throughout the day, and got an Neutropenic shot every evening, and at midnight every night they took blood for labs.

I can shower, I can eat, and in general I felt good and on the mend. 

Visits

I had some nice visits from my wife and dad, and even played some card games with my wife. Very fun. 

Reacting to Platelets

One small hiccup happened over one of the nights. My blood count was still a little low on Saturday (or was it Sunday?) night, and they gave me more platelettes. For the first time I had a reaction to them. My head was swimming/throbbing, I had a slight fever, my lower back ached like crazy, and my hands tingled. They threw me on some meds to alleviate all of it, but boy did it feel bad for a bit.

By mid morning though all was well.

Losing my Room

It turned out that I might loose my great room. They had a Bone Marrow Transplant patient coming that needed it--and frankly--everything had been going so great for me I did not need to stay here. Was sad that I might have to leave it, but it was much more important to go to someone that needs it.

However--apparently that patient cancelled--not sure how one cancels such things, but I presume they went to a different hospital.  

Just to be sure I could stay though I worked up a whole host of issues Tuesday.

Arggh

Sometime Tuesday AM things went a bit bad. Diarrhea was back, and then my labs showed my blood levels being  so low they needed to give me more platelettes and transfusions. 

When they came to give me my blood though, I had spiked a fever of 102. So they couldn't do any of it until they got the fever down. So then they had to work on that, and they started in on some antibiotics.

Well those started to cause a rash, so then they had to address that too. 

I have basically spent most of Tuesday attached to all the monitors again, back in a hospital gown, lethargic and out of it, sleeping most of the time until now. And even then--I might just lie back down.  

Pie

But I did have a delicious piece of pie that friend made, and that Jen brought me. And made so much, so much better...

Day 15 - Friday

Another good day.

Clean

The big news today was that I got to be detached from my I.V. except for a few times a day for antibiotics.

That also meant another shower, and, I put on real clothes. 

I almost feel like a regular person. :)

Moving on Up

From this point forward, I think I will be posting less often. In general I gather its uphill from here until I am released (in maybe 11 more days?). I will get to go home for about a week, then back into the Hospital to do it all over again.

My lower lip is really swollen and pained--infected or something I think but nothing to worry about. The only other big thing ahead I think is losing my hair--which has not happened yet, and I was assured its 100% with this kind of chemo. 

The good news is--I think I have been through the worst on this round. All I need to do is build my immunity up!

PSP

In one other note a friend lent me a PSP. I know I'm several years late to this, but what an amazing little device! Crystal clear screen--able to play movies, browse the Internet on wifi, download tivo recordings to it--I mean wow!  As to the video games--I'm just not that much of a console gamer--driving a car with my thumbs is still not a skill I plan to hone.--but the golf was a nice substitute for the real thing! 

Saturday

It's so late I'll squeeze in Saturday too. Slept poorly--was up for a few hours in the middle of the night and ended up sleeping away the morning. Had great visits with my dad and wife. I discovered the joys of a woolly hat with a nearly bald head. 

Day 14 - Thursday

Thursday was a good day.

I did have to have a platelets transfusion in the morning, but seem to be progressing well.

One of the nicest parts of the day was a great rain storm that passed through. Outside my window some Osprey flew around in the rain and fished. It was great to watch.

My weight is down a little more--I am 189 now, and here is a pic!

In the evening I was given  my Neutropinic Shot, which stimulates my white bone marrow to start making blood cells again. (They wanted to give it to me in my belly, which I was not down with so they gave it to me in my arm.) 

I did end up with a fever in the middle of the night--which was not great, but it seems to have passed.

Overall Thurs was good!

Day Thirteen - Wednesday

Today turned out to be a great day!

Morning

It all started like any other day, but it was all the little tiny things that built up to make it a great one. My morning was good--had my transfusions--and it was otherwise uneventful. I did end up chatting with my manager online too which was great as it is nice to feel connected to what's going on at work--even if only minimally. 

My mind is still working after all :)

Visit

Jen, who has been a little sick was  able to visit again. It was so nice to see her after what turned out to be several days, and especially nice while I'm feeling well. I was still under the CDT or CDif concern though so she had to wear rubber gloves and a big yellow gown, as did everyone who had to enter my room.

CDT (CDiff or whatever its called)

Another great thing that happened though after her visit was that the CDiff isolation was cleared! As I mentioned there are three tests to check if you have it--the first was positive, which meant they had to do the second which was negative, which meant they had to do the third, which takes 48 hours, and it came back negative. No more big yellow gowns!

IV and Cleanliness

So, with my drip chemo done, my PICC line is used to deliver saline and some anitbiotics from my IV.  But my saline drip is so slow that I can get off it for short times. This means I could have a shower!!!!!  Oh man was that good. After a week and a half its pretty nice to have a real shower :)   

Dinner

Jen also brought me some real Smuckers peanut butter and Smuckers Jelly and fresh bread. Made for a delicious dinner of "stick to your ribs" PB & Js. 

Facebook

I joined Facebook, which is currently in the process of overwhelming my email inbox but I'm sure I can toggle a setting somewhere. Its nice to be connected :)

Up from Here

Wednesday night I had the charge nurse--the head nurse of the floor. Because she has so much to do, when you get the charge nurse, you also know you are the easiest--or least sick--patient. So that was nice. She was really informative and we had a good chance to talk more about what I should be expecting. 

After my midnight labs came back she let me know that I had reached .3 on my white blood count and was now at .6. This means I have probably hit bottom in my white blood count and now comes the long climb of building my immunity back. But that's a good thing! 

My doctor told me I am on day nine and should be out of my first round between days 21 and 28.  

So overall -- a great day!

Day Twelve - Tuesday

Tuesday started off rough--I felt very drained still. I watched movies and zoned a bit. As the day went on though I got some strength back and felt generally better. 

PB&J

I even had a real meal for dinner--a peanut butter and jelly sandwich and a banana. I had to order it from room service which meant it was all presented on a large tray, and the sandwich was under a dome--a bit over done considering the meal. Also, because everything that comes from room service comes on a plate that is heated--the bread was a little crispy and the sandwich warm--which was also a little weird, but still--overall--the basic PB & J was just what I needed. I also had dome home made cookies that my wife had made--yum!

Meals & Offers of Help

I gather some of my friends in the neighborhood are getting some meals together for my wife for after her mom leaves. Thank you so much for this! I have lots of people in the hospital who's job it is to take care of me, but of course my wife and family doesn't so the help is appreciated. 

And thank you to everyone else that has offered help of all kinds, from babysitting, to yard work, to everything. While we may not need to take you all up on it, its wonderful to have such supportive, kind, loving and giving friends and family--and to know that we can if we need to.

Thank you--from the bottom of my heart.

Chemo

Chemo (on an IV) ended Tuesday night. Crazy! I had in my mind that it was going on for a few more nights so it came as a surprise. 

Hurray!

Of course the whole point of it was to break down my blood and kill the bad cells off to build it all up from scratch again. So all the effects are still forthcoming. But at least the meds are done.

Blood

Every night at midnight they take labs from the PICC in my arm. They run them to check my blood counts, and every night for the last few they have been telling telling me to expect transfusions. The whole point of the chemo is to drop the blood counts--but every night my levels are borderline but OK.  Well Wednesday morning at 4:30 AM the transfusions started again.  I am into my second bag and no fevers or shakes or hives or rashes so all is going well :)

Though it started rough -- overall it was a good day!

Day Eleven - Monday

Not the best of days. Mostly exhausted--lots of sitting around and watching movies.  Not a lot of energy. Days of loose bowels are draining--on the up side I am back to 193 pounds. 

There is a chance I have CDT (or CDiff) though apparently it is an array of tests that works that out. The first one I gather is a bit of a broad net--it was positive, but then the second needs to verify, and it was negative, so then they need to do a third. 

I received more cards, emails, prayers, and well wishes--every single one is appreciated. Thank you!

Day Ten - Sunday

Sunday was overall a good day, with a bad end in my end...

Settled In

I started a little glum over how much I am missing everything and everyone, but bucked up with a visit from my wife. Felt sluggish most of morning and read the paper, napped, and such. Jen's parents visited which was a nice visit.

I gave myself a sponge-bath and took a little walk around the floor. With my new-found independence I even made a frozen pizza in the toaster oven in the kitchen on the floor for dinner. 

I think I paid the price later.

Bowels

So--not the nicest topic, but my bowels were not the best Sunday night. Not sure whether it was the pizza or not or if  I have caught an infection (the risk of which caused them to prescribe another antibiotic and morphine). The concern, as with everything while my immune system is so suppressed is infection. Apparently CDET (?) can be a pretty nasty one and they want to avoid the bowel infections as best they can.

They measure everything here--all the food and drink that comes in and out.  I'll spare you the details--but not having the best control of one's bowels is a terrible feeling. It made for a bad start to Monday--but more on that later.

Day Nine - Saturday - St. Valentine's Day

St. Valentine's day was overall a good day with a few quirks. 

(St. Valentine was a healer I think.)

Jen Visit

It all started with a visit from Jen which was wonderful. She came laden with Valentine's stuff, including a card, balloon, and many cards/pictures from Anna. She also took the cards I already had and hung them around the room, dressing things up a bit. Thanks to everyone for the cards--they are wonderful, let me think of you, and brighten the room.

I had sent her a Valentine's ecard "Love My Life With You" and she had viewed it before coming in. She was just as touched as I was by it--its beautiful, fun and a little funny--so like our relationship--warm, loving, beautiful, and fun. I am a lucky man to be so loved and so in love.

We had a wonderful morning eating some Valentine's candy and with my new-found freedom, we took a "stroll" (me with a mask and IV-tower-on-wheels) around the ward.

Dad Visit

My dad then visited a little while later and stayed for two hours. We had a great chat. He is not all that computer savvy, so is not able to read all of this or really research the disease as well. So it was a great chance for him to learn about what is going on with me and for me to catch him up on everything.  We also had a good chance to just talk about other things like family and nonsense. 

We also went for a walk with my IV-tower-on-wheels (which reminds me a bit of H.E.L.P.er on Venture Brothers. :) ) and I showed him around the ward. It was a nice visit--but I kept him long--he had to get back to the house for lunch with everyone.

Lunch

I ate a real meal--a vegetable soup and grilled cheese sandwich. It was nice to do but made me feel a bit sick to the stomach. Just a carnation instant breakfast for dinner (thanks again Susan!).

Disease and Drugs

In general I am doing well. They are reducing my steroids daily, but the infection doctor made it clear to me that I will be getting fevers and more eventually--its just a matter of when. Also apparently there was a shortage of Vessinoid in the whole Florida Hospital system.  Some was procured for me though--and I hear now (Sunday) the issue is resolved.

Video Games

I spent the afternoon wasting away the hours with a video game. It all felt rather pointless in the end. I think I started to come to terms with the length of my stay here and how I am still just at the very beginning. I am a bit tired of being tied up with monitors and IV lines, and not being able to bathe. It's frustrating, but certainly manageable. I've got it pretty good overall.

PICC

I was weary and tried to go to bed at around 9ish, but suddenly, after a very interruption free day, things got busy. They had to change out my 24 hour drip chemo (Cytarabine) and then the IV nurse came down to change out my PICC dressing a little early (was scheduled for Sun). 

It all went well, except that after she left I realised something felt odd. There was this terrible little pinching feeling--its just a pinch--but unending. It looked to me like there was a piece of tape below the dressing tearing at my skin.

Well first they had to check all the PICC line blood flow to make sure it was good before they could call the IV nurse back. But that is what it was. It took awhile to get resolved--and boy did it hurt until then--but thankfully she just redid the dressing without the tape and all was well.

I had a couple of orange Popsicles and called it a night--a fairly uneventful one at that. 

A hope you all had a wonderful Valentine's day!

Day Eight - Friday

Friday (um the 13th) was a great day!

It started with me feeling well, was followed by Jen visiting, some time back-filling my blog, and blossomed out into even more...

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. 

On Tuesday, I had an orientation to what I would be going through from the Education team,  but Dr. E gave me a whole different point of view--more of a holistic view of how the disease is fought, and its history and some insights into its future. For an info-lover like me it was fascinating. He even has a presentation that he has given internationally to keep the oncologist community up to date.

Here's a few key things to remember about the disease too:

1. No one knows why you get APL, but its not genetic, so family does not need to test for it.
2. It's not infectious--no one I come in contact with can catch it from me. 
3. There is nothing that I did to bring it on--it just happened.

All of that is nice to hear as you sort of wonder. 

There was even a practical side to having him look over my charts. Apparently a medicine that another doctor prescribed to ward off fungal infections was oral, and can interact with the Vesinoid--so he swapped it out. Nice to have yet someone else looking out for me.

I'm a lucky man.

He also mentioned www.nccn.com. I plan to check it out.

Cookies

Jen made me some cookies, and in other good news, today I ate some. I'm back to some solid foods at least--though I'm still not eating a whole lot.

Anna

Talked with Anna, my daughter, on the phone about all sorts of things. At three she's not much of a phone talker, but I heard about her Valentines party at school and another with Mom's club and her grandparents all being there tomorrow on valentine's day, and making cookies and so many wonderful things!!!  As she got off the phone she said "I talked for a long time!"

It was so good to talk with her. She has not visited yet but will once she's not got a runny nose. I learned from Dr. E. that kids actually produce 10 times the infection of adults. I don't remember the terms he used, but it was along the lines of: "If a child and I both have the same cold, I will be putting 1,000 (of the virus) and she will be putting 10,000 (of the virus)."

Strolling

I threw on the new robe Jen got me, donned a "don't infect me" mask, and went for a walk in the hall. I know its not much--but after being all but bed-ridden for a week, it was really wonderful to walk up and down the hall. I even did 30 minutes on the treadmill at the rip-roaring pace of 1 mile every half hour. What a boost! It really felt great.

Dollhouse

All of that was followed up by a light dinner and a little TV. I watched Dollhouse, Joss Whedon's new show. It is still getting its legs, some bad acting, but some good ideas, and it has a lot of potential.

And that was Friday--a great day.

Press Secretary 4 (Final?)

And here may be the final entry from my press-secretary. 

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!)

So, as requested--here is a picture taken 2/15/2009.  Enjoy!

Day Seven - Thursday - So the Blog Starts Here?

Well, sort of.

My wife, Jen,  gave me the idea to start the blog on Monday--a few days ago now--and due to the combination of fatigue, short attention span and other things--it took me  awhile to get going. 

I felt like I wanted to start chronologically, and back fill in the history--and I still will--but as she pointed out, people want to know how I am feeling now, so I had best speak to the present, and get back to the history when I'm a feelin' good.

Thursday

Thursday started great. I was feeling good--in fact, I started this blog and put in the first two entries about what I have, and my first day in.

I had a great nurse and  a couple of techs  who really took care of me. The techs are both training to be nurses here on the property and Florida Hospital's Nursing School, which is on the same property as the hospital. They both are months away from graduation.

Food

In general my appetite was all but gone. I think had a banana (joy!) and some cereal and was off to a great start, but for the rest of the day I think it was a couple of carnation instant breakfasts and that's about it. 

Fluids

I am still full of fluids. They fill me through the IV as it somehow helps the chemotherapy, but it means I have cankles and a ginormous belly. If you recall, when I checked into the hospital, they weighed me in at 187.5 (with clothes and shoes, etc). I am riding along at 211 currently--a big blob of liquid--no sloshing though--more like an inflated balloon.

Le Salon

I decided to bite the bullet and get my head shaved. I'm going to lose all my hair from the chemo, anyway--and what with it being 6 days since it was last washed, it was certainly easy to want to get rid of. My two techs came in and did the deed while Jen looked on.  

My hair is fine, but crazy thick, and the clippers tugged at it a bit mercilessly, but overall it went well. I now have an all-but-shaved-head with teeny tiny hairs enthusiastically at attention. I then used the clippers on my 6 day old beard --which was OK--and now I am scraggly all over :)

The Bath

The final part of the salon was the sponge bath. Jen the day before gave me one, and it was so great to feel clean after 5 days without a shower that I wanted one again. Plus, as I was covered with little shaved hair remnants it seemed like a good idea. At the same time the tech can change the sheets so I get clean and my bed gets clean, and I feel like a new man.

Unfortunately today's fell apart. After getting some water on me, I just got cold--really cold, and started shivering. I'm sure a little bit of it was due to the fact that my head was a bare frozen ball, but even so--it was all too much to bear. Jen rushed through it--thankfully--and dried me up and threw me under some blankets in a chair while I tried to warm up. 

The Fever

A little while later I as back in bed with clean sheets and a blanket on my head--feeling poorly. Jen headed home after an overall nice visit, but I was not doing great. I threw up, and they took my temperature and discovered I had a fever of 101.5 I think. They game me some Compazine (sp?) anti-nausea stuff that also knocks me out--and I was down for most of the evening.

The Embarrassment

At midnight they came to take my labs, which they do through my PICC. Really neat. But when they came I realized that at some point I had wet myself. Even with that, before I cleaned up, I used my urinal (think jug with handle) and filled it to a liter in one go. (The nurse commented on me having a huge bladder.)

The nurse was incredible. She set me up with a basin and wash clothes to clean myself with and fresh boxers. I changed and she made my bed, did my labs, took all my vitals and even more lickety-split. And she hooked me up with an orange popsicle--my food of choice.

I slept through most of the night, with another popsicle break at some point.

And that was Thursday.

Day Five - Tuesday

Tuesday was good but led to a rough night...

Oxygen

One thin I was getting used to was being on oxygen. I started with a full mask that is attached to a pump on the wall. Eventually, I moved on to a nasal only version--but that's rough on the nose without a humidifier.  A humidifier consists of sterile water in a bottle that the hose runs through first. I felt like it was sort of the opposite of being a fish. A fish needs air added to his water tank--I needed water added to my air.

Also because of the fluid on my lungs I now need to sleep with my head upright. I found that out Monday night when I didn't. My lung fluids were up in the morning.

I am attached to a monitor--one of my many tethers. It tracks my heart rate, my oxygenation levels and my respiration. Interesting to see my oxygenation levels, which they want to keep at 91 or higher. With the oxygen its not a problem, but without--its not easy.  I am generally short of breath without it.

The Chair

I spent a lot of time in a chair today instead of a bed--hours and hours in the end. It was great--I spent time on my laptop catching up on email and watching TV. Jen got me a universal remote. I watched Heroes the night before and then Fringe sitting in a chair.

The only downside was the fact that all the liquids settled in me and my legs became huge. It was good though, and a nice change from my bed. 

Call with Joe

An old friend and ex-co-worker called at about 10 at night. He had contracted ALL, a different form of Leukemia, last year. It was wonderful to talk with him. He confirmed that I have it pretty easy with APL. His process, which included Bone Marrow Transplant was much more intensive and severe than mine.

We talked for almost an hour I think--thanks for the great chat Joe!

Bad Night of Not Sleep

Yeah--this night was a bad one. I forget if I had a fever--I think I did. I know I slept horribly if at all. My nurse was great and helped me through it, but it meant that Wednesday I was totally exhausted.

Press Secretary 3

And here is another with some funny follow-ups...

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.

First of all--to be accurate--irradiated splashback was my term--I think in all accuracy it is not radioactive, but rather chemically active. But still--it makes for good humor.

In fact, if you happen to have ever played Magic, you'll get a kick out of these that a friend did after receiving this email.

Of course, any good Anti Splashback deck should have a few Swirl of Protections.

If you don't get it--don't worry--but it is super geeky hilarious and had me laughing our loud. :)

So thanks!

Day Four - Monday

Day Four turned out to be an important one. A lot of things changed between 3 & 4.
Monday found me in new places...

Fluid on the Lungs

So, this really started on Sunday, but in addition to my nausea, I was also feeling lie I was catching a cold. This is a very bad thing. So bad in fact, that they pulled in a special respiratory doctor, took chest x-rays (every day for 5 days or so), got me connected to the "Rapid Response" nurses who are sort of expert super-nurses that roam the whole hospital, and put me on oxygen. 

I had coughed up some phlegm (greatest hangman word ever) with blood in it and there was a little fluid on my lungs and they wanted to make sure they could contain it.  I only learned this much later, but remember the brain bleed? Well, the few cases of APL where they lose someone is usually in the early days to a brain hemorrhage. SO they were watching this and my complaints of (probably sinus) headaches very closely and very seriously.

I just remember feeling even sicker than normal and being very frustrated.

Frustration

The roller coaster of blood transfusions and sickness was really getting frustrating. The thing is that as far as I could tell it was postponing my "real" chemo-therapy. They kept pushing it back and feeding me other things. I was now on antibiotic drips, steroid drips, and still taking plasma and saline. 

I was ballooning full of liquid and in fact on Monday weighed in at 211.5 pounds. If you recall I checked in Friday at 187.5. 

What I didn't realize was that the Vesinoid (also called Atra) was really the first part of my chemo assault. Even though they're just pills (4 in the morning 5 in the evening and I will be taking them for 16 months), they are the trigger for everything else, and all of my reactions were due mostly to that.  I learned later that my reactions to it were unusually fast, and unusually quickly resolved--but still normal.

Still--it was frustrating, debilitating, and I was over-working the nurses.  Which is why it was so great that I was moved to a new floor.

New Clean Room - New Clean Me

One of the biggest boons on Monday was the fact that I got to move to a new floor--the Bone Marrow Transplant floor. Apparently this floor deals more especially with leukemics, though my kind is still fairly rare.

But the floor is better setup to ward of external disease, and there is a better nurse to patient ratio of just 1:3. 

My room is much larger--though when I arrived I was still pretty much tethered to the bed through IVs and oxygen--but the feeling of some space helped a lot. It also overlooks the lake, so if I sit up and peak out or walk over to the window (once untethered) the view is beautiful. The helicopter takes off right outside too.

One of the greatest things was that I was allowed (while still tied up to oxygen, etc.) to stand in my room and give myself a sponge bath. What a wonderful feeling to be clean after so many days of night sweats and overall wallowing in your own stench. 

It was like I was starting over and on a very positive note.

Thanks to my Friends

In addition to some of my friends on the outside, who I still think to thank daily for all of their love and support, I am fortunate to have a couple of friends on the inside. Though I would have been moved somewhere I'm sure--I believe my condition warranted it--I also feel sure that my friends had some say in getting me here, to the Bone Marrow ward and I love it. Maybe they didn't--but if they did--thanks--it has helped my recovery more than you know.

Press Secretary 2

By the way--did you know the etemology of Secretary was "keeper of secrets" Secret-ary.

Here's he second update:

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

I spent a lot of Sunday recovering from Saturday night and the lack of sleep. 

The PICC

I got my PICC line today. It's all a little weird to think about, but it works great. Up to now I had an IV in my left arm and another in my right hand (which failed Saturday night--they had to take it out).  The PICC is the lower-tech alternative to the Port.

My room quickly looked like a surgery as a couple of IV nurses spread out their gear sanitized everything and donned their masks, head covers and gowns. They scrubbed up the inside of my right arm, gave me some local anesthesia, and ran a picc line into the center of my chest.

Now that probably sounds a little weird--and it is--but it feel like nothing. And after all of the lab cultures (including the lady who kept accidentally pulling the needle out after getting the blood) and IVs, not having to be poked in the arm is most welcome.

So now all of my IVs run through my picc line, and even when they need to draw blood for most labs, they can do it right through there. It's yet another amazing medical thing on this journey.

Visits

Jen visited - she visits once or twice every day, and we're fortunate that we live so close to the hospital. She can ride her bike up--which saves on the parking fees -- and it actually takes about the same amount of time since she doesn't need to hunt the garage for a parking space. Yet another reason our neighborhood is so wonderful (proximity to the hospital) and why everyone should want to live her. But if you know me I espouse our neighborhood's benefits every chance I get :)

My dad visited with her in the afternoon. By the time he came though I was not feeling great. Pretty much exhausted and they did not stay long. Still, it was great to see him.

MonsterQuest

My day was spent dozing in and out of consciousness watching a Monsterquest marathon on the History channel. So I spent the day with the Sasquatch, his Chinese cousin (Yermin?), the Chuppacabra, the little men of Indonesia, giant Camel spiders, and other mythical? things. BTW, the Chuppacabra one was really interesting. Some Texans had shot a couple of canines with extra long teeth and skin like elephants--so there was actually something going on--perhaps a disease? Anyway--I fell asleep before I found out so if anyone watches it clue me in :)

Eating and its Inverse

I ate a little something for breakfast, like cereal maybe, but by lunch I felt poorly. I tried a little cherry jello at some point in the afternoon and just threw it up. 

The Drip

I think I spent the evening zoning in and out. It was not a good night, but at least, for the first time in days, I slept with minimal interruptions. Mostly just the vital checks every four hours, I think another bag of platelets, and my every 8 hours double-bag of  plasma.

All of this and other things like antibiotics and nausea medicine, are delivered through IVs. These are mostly delivered with pumps to control the flow. You form a love hate machine with your pumps. They are after all your-life line, but they do like to beep and let you know when things aren't right--which is good--but often wakes you up.

And that--as best as I can recall at the moment -- was Sunday.

Press Secretary 1

Am I lucky or what? A friend has volunteered to get news out to everyone. I am not up on the ettiqueete of including people's names -- so for now she will just be dubbed my Press Secretary. Her messages have been really helpful!

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

I'm actually writing this several days after the fact.  Saturday is a bit of a vague memory at this point, but this should give you the gist. 

Feeling the Love

Jen (my wife) visited today and told me everyone is writing and sending their love. People are gathering up things for me to do, from a PSP to DVDs to books and more. I am really overwhelmed with the outpouring of love and help. 

The great news for me is that people are there to support my wife too. For me, well I have a cadre of professionals looking over my physical well-being, but she has to soldier on like everything is normal, and still fit in time to visit me, all while I am not around to help out at all. Fortunately, her mother was able to come down and has been a tremendous help to Jen and our daughter.  

The Laptop

So, I think it was also today that Jen dropped off my laptop. It was great to see that there is free wi-fi, and that I could even keep up with email. I am sure I would have felt so isolated without it, but the fact that I could connect was tremendous.

And ultimately led to this blog. But today, all I had the energy for was to open it and see that it worked. Then I crawled back into bed.

Fresh Food and Flowers

So, I am not allowed to have fresh flowers, fruit or vegetables and am on a Neutropenic diet. In short, my white white blood counts are so low that I could catch bacteria or a fungus from a plant. This means everything I eat must be cooked.

It also means that people all around me are starting to wear masks--which does make you feel a bit sicker.

In general I ate pretty well all day though and even had salmon for dinner.

Brain Bleed

One of the other things they have to worry about is my bleeding. My blood is not the best about clotting at the moment, and that fact that I am having some bad headaches has everyone worried about internal bleeding of the brain. I am sent for a CAT Scan, and fortunately all came back well.

That's over in the new building and took miles of corridors to get to. It's amazing how big this place is.

Of course, a day with low blood leads to a night of...  

Platelets, Plasma, Blood, and Fevers

So, to help bolster my system I am given a bag of platelets, and two bags of blood transfusions. In addition, they have started me on 2 bags of Fresh Frozen Plasma every 8 hours. This means another bad night of sleep since I need my vitals to be checked every 30 minutes. (I really wish the blood transfusions could be scheduled as day time events :) )  On top of all of that I had another fever, which broke with Tylenol and lots of sweating.

Two nights of heavy sweating making you feel pretty gross when there is no way to clean yourself.

Nurses

Of course it is the nurses who see you the most. I was pretty rough on them--on the particular floor I was on, they don't have to be checking on patients or giving quite this many transfusions normally I don't think--and I kept them very busy.

I have extra respect and love for all nurses after this. It is tremendous the amount of effort and care they put in every day--I'm even tearing up writing this--but wow they are incredible. The care, compassion, and hard work just doesn't stop for them and they all are so cheerful about it all too. 

So if you know (or are) a nurse--hug her/him for me.

So, that--as best as I recall--is Saturday. 

Day One - Friday - First Night In

Well, February 6 was the big day. Check-in-to-the-hospital-day.

Check-in went well--I arrived at around 2 PM I think. The thing is all day I felt fine. I am supposed to be feeling weakness (OK a little) and be bruising and out of breath, but We parked the car went up several flights of stairs, and walked ages to check in. I guess I was a little short of breath, but still the strange thing was I would not have been to a doctor for any of the symptoms that I had, even  at the time I checked in. 

Weight

At check in--I weighted 187.5 pounds. I might have weighed that or less 10 years ago--but its been a long time. A couple of years ago, I was pretty heavy at around 210. This year I had gotten myself down to 199, and after my gall attacks (where I really started to watch what I eat) 192. But just 3 days earlier I weighed 191. So the leukemia weight loss was kicking in...

Settling In...

They took me up to my room on the tenth floor and got me situated. The room was nice, if a little small, but overall fine. I met a nurse, got an IV started and was officially in the hospital. Still I am very optimistic and just ready to resign myself to the treatment.

That night, I started chemo with my dinner. I am getting three kinds of chemo, and this is the first--Vesinoid.  As I understand it, with the type of Leukemia I have, young cells don't mature. The Vesinoid forces them to mature, but they can carry all sorts of granules of some sort with them that can cause issues like inflammation and other things. Anyway--I start this chemo before the other chemo that kills off everything. 

The next thing I discover is that I am to have a "port" inserted. A port is a device they insert in your chest that allows them to directly give you chemo and take blood as needed. To do it however you need to be healthy enough  for surgery, so they will need to give me platelets and transfusions since my blood counts are absurdly low. 

Mugga Test

Before that though--I am whisked off for a Mugga (sp?). They take me down to a room with radioactive warning symbols all over the place and I meet the tech. He explains that in this test, they extract some blood, tag it with radioactive isotopes, and then reinsert it into me (all to the erratic chattering of of a Geiger counter just in case you forgot what was happening).

The reason for the test is that one of the chemo-therapies I am scheduled for is "cardiotoxic"--meaning it can hurt my heart. If my heart chambers aren't filling and emptying efficiently, the chemo can sit there and cause long term damage. 

I lay under x-ray cameras that synchronize the images they take with EKG readings and measure the flow of the blood through my heart.  Pretty amazing.

Transfusions

By now its something like 10 at night,  and I am back in my room.  As I mentioned before I'm scheduled to get a port. The surgeon is actually going to be the same one I had scheduled my gallbladder surgery with. He has scheduled the surgery for 5:30 AM.

To get my blood levels to the point where I am able to have surgery, I am going to need transfusions. As I recall, it started with a bag of Platelets, and followed by two bags of blood. The platelets go fast, but because its my first time having a transfusion, they have to do it slowly-about 3 hours a bag for the blood.   Time is pretty tight.

In addition, while delivering transfusions, the nurses need to check your vitals every thirty minutes--blood pressure, temp, that sort of thing.  So, all of this means, that when my immune system is already down, and I am on my way to an AM surgery, in my case, I also got almost no sleep.

Enter our friend the fever, a fever of 102.7.

I felt miserable--no sleep, high fever, but thankfully after some tylenol and a lot of sweating, the fever broke.

Port Surgery?

At 5:30 my transporter comes and carts me down to surgery. They take me to the wrong one at first, which was funny, but eventually I end up in Rapid In and Out.  My bed and I are put in a surgery cubby to await the next steps. 

I get a new IV in my right hand to compliment the one in my left arm, and am all setup when the doctor arrives. He looks over my charts, and, like my gallbladder surgery, this surgery is cancelled. After everything I went through to get to this point it was very disappointing. 

There is an alternative to a port, and its called a picc, and that is what I will have instead.

The Dr. explains that because I had fevers, and because they could not pull labs to check my blood levels (since I was still receiving transfusions) it was too risky to risk surgery.

Exhausted, deflated, and a bit glum I am wheeled back to my room.

And that, was Friday.

Introduction

So, I was diagnosed with APL. A type of Leukemia (cancer of the blood)  that is a sub-type of AML.

As my Dr.'s have said. "If you have to have Leukemia, you picked the best kind to have." Apparently, compared to others, it is one of the easiest to treat with a great chance complete remission.

The news was surprising, and hard to take--and I was sort of in denial for a bit, but there is not a long to be in denial, when you have to go to the hospital a day and a half after diagnosis.

Here is how I told some work friends. 

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

And so the blog begins. I started this blog to keep track of my journey--the highs and the lows--and to reach out to my friends and family, and maybe give someone else going through the same thing an idea of waht to expect.

Enjoy.