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!