Doctor's visit

I have had a great week.

Home

I have been enjoying hospital parole very much--and have mostly laid low. Had a few visitors, went out for a few meals, but mostly just enjoyed normal every day things. Played scrabble with Jen this morning on the back patio for example. 

It's great to see Anna--though she does have more energy than I--which has always been true--there's just a larger gap now :)

Been a bit tired overall, and slept last night for about 13 hours.

All in all a nice break.

Doctor's visit

Visited the doctor today and all is well--blood counts are pretty normal.  No bone marrow biopsy today, I will have that after the next round of Chemo--which is referred to as my first consolidation.

I go back into the hospital Wednesday, and begin chemo which will be five days--then I am an outpatient until I get a fever--which undoubtedly will happen. I will also get a port on Wednesday.

I will post more once I am back in...

Day 26 & 27 - Tuesday and Wednesday

I am home!

The PICC

Before they could discharge me they removed my PICC line, which was the fastest thing ever. Basically, the lifeline that went from my arm to the middle of the chest,  and is where they have been drawing blood, giving me chemo and a million meds for 3 weeks, was simply yanked out it 1 second. 

One tug and a big piece of gauze to stop the bleeding.

My Dr. wants to try a port next go round. 

The discharge

So, on Tuesday I was discharged with little fanfare. The whisked me out of my room, and then, after a bit of a walk, I was outside feeling the sun and breathing fresh air for the first time in weeks. 

It was great.

Home life

It was so wonderful to see Anna. To her I am just back home--and have silly hair. Several times she has said, "Daddy, I'm so happy you are home." which warms my heart--she's a real sweetie.  It's really wonderful to watch her shows with her and play games. Thrilled to see her again.

I ate lunch at my favorite pizza place and dinner from a local Chinese place. It's just great getting out and about again.

Visitors

If you are not sick and want to say hi, feel free to come on down. Don't feel obligated though--with all the cards and help and emails, I feel the love, and know you care. I really am a lucky man to have such wonderful family friends and support. 

Call first to make sure I am not snoozing--which I'm doing a bit of--energy levels are not quite up to prime.

The next steps

I have an appointment with my Dr. on Monday. I think they do another bone marrow extract to test where I am. I suspect based on that we will schedule my port and the next stage of chemo. 

At least this time some of it will be out patient until I get a fever--at which time I am immediately brought back in. 

The hiatus

And, at least for now--I am going to take a break from the blog. I am sure I will start up again once things go into round two, but for now, not much to say except everything is great! :)

Day 26 - Tuesday

Tuesday has only just begun but I have good news!

I am being discharged today.  They will remove my PICC line (I think I will eventually be getting a port) and I will be home for at least a week before doing it all again...

Hurray!!!

Day 25 Monday

What a difference a day makes...

Bird Watching

I woke up with the sunrise and it looked to be a beautiful morning outside. I pulled out my dad's binoculars and decided to watch the day wake up from my perch over Lake Estelle. I watched the anhinga start their day swimming and fishing, and lots of other birds get their day going too. A large osprey alighted atop a tree right by my window and spent several minutes surveying the scene. Over the course of my stay I have seen egrets and heron, gulls and osprey, and even got to watch a kingfisher for quite awhile. I also watched the otters in the lake, and on Sunday morning their are model sailboat regattas. 

I'm really glad I spent about a half an hour watching it all Monday morning--I had no idea it was my last day there.

The Day

I felt great. My blood counts were at 3.6 --a big leap--and everyone seemed to think I was improving well. Various doctor's came by to verify that news of my lip was true--the swelling was down and we did not need to biopsy it. 

Jen brought me a Chik-filet-a sandwich and waffle fries for lunch, which seemed like heaven--both a comfort food and a touch of normalcy.   

And then I heard that I was moving back to the 10th floor.

And then I was gone...

It was really sort of sad. It was not so much about the room itself, but about all the relationships. 

Over my weeks here I've really gotten to know and befriend so many of the nurses and techs. You get to know them and them you--during a time when you are going through so much. I mean--one's about to have a baby, another bought a house, some are about to move, some are about to graduate college, with some I talked movies, others books, others children,  etc.--you learn about them and who they are and become friends.  It's weird to up and leave without saying thanks for the incredible amount of work and care you gave me, and goodbye. 

I will send a card--but still--it feels weird, even sad, to just disappear. 

I'll miss them.

Back to Ten

The tenth floor is a much older floor--a floor with a bit more dated decor--back when muted pink/beiges and water color roses were in. I have a strange sort of dark/light rose-colored camo wallpaper in my much smaller room. My window looks out over the rooftops and towards a lake to the north, but everything in the room does its best to direct you away from the window.

In a holistic health sense--I am convinced environment affects mood and must affect recovery. Here it does seem a bit like the environment has more of a passive aggressive approach. In other words: you'd better get well so you are not here. 

I've Got no Strings...

One thing that is sort of liberating though is how free I am here. I don't have to pee into a jug or poop into a cup. They don't measure everything I eat and drink. No one is wearing masks (in fact my nurse had a cough). I don't have sticky tabs and heart monitor lines attached to me. I am completely off of IVs now, and only take some meds by mouth.

I am untied.

Wait

And here I am--waiting--waiting for my blood counts to rise--waiting to be sure that I don't catch a fever now that I am off of all those anitbiotics, antivirals, and antifungals.  

Waiting.

My doctor says I should be home by the end of the week--but everyone else seems to refer to "going home soon" like it could be any minute.

I'll keep you posted!

Day 24 (Sunday)

This was a good day.

Feeling Groovy

Other than my GI track which is acting up a bit recently, I am feeling better and better. 

• My lip is down to about normal size. (The sore itself will take awhile to heal.)
• My rash is subsided.
• Nosebleeds are long gone.
• No fevers.

All in all--I'm feeling good--i even did 30 minutes on the treadmill. 

I have less energy than normal, but feeling good.

Hair

With everything that was going on last week, I hadn't really been keeping you up to date with the whole hair loss story. So, I was sure that I was going to lose all of my hair--I feel sure I got that from my doctor, but maybe I didn't.

Well--people don't necessarily. Apparently some hair follicles are more delicate than others.

So--last Wednesday-ish, my beard started to fall out. At first it was only if I pulled little, and eventually it was sort of like Christmas-tree needles that were too dry.  I still have a few hairs there--but most of them are gone.

On Saturday, my head hair started to fall out. It is a lovely patchwork of thin and thick areas at the moment--I look forward to it getting further along.

But--NEWSFLASH--according to my doctor that may be it. We still have to wait and see, but the other hair on your body is not as delicate. I don't really care either way, but it will be interesting to see.

Food

One of the friends that made food for Jen had made enough that I could benefit from some leftovers. It was delicious--and so good to have some not-hospital food. They do a pretty good job here--but institutionalized cooking on a large scale can never compare to home cooking.

WATCHMEN

Finished it. 

Some curiousness near the end--but overall--absolutely fantasic.

Home

My white blood cell counts are really rising. Sunday morning, they were 1.6. Monday morning, they are 3.6. They are really looking at my neutrophil count--but its all on the upswing. My doctor feels confident I'll be home by the end of the week!

Incidentally they re-zeroed my bed before weighing me and I was 180.

Summary

In short:

• Side effects: down
• Hair: down
• Weight: down
• Mood: up
• Food: up
• Blood: up
• Outlook: up!

Day 22 & 23 (Friday & Saturday)

Things are on the rise...

Blood

I didn't find this out till late Saturday, but apparently my counts, which I knew had dropped a bit from their high of 2, were really low. Over the last few days, I presume when I was having all the fevers, my white blood counts had dropped to .4, and had only risen to .6 by my Friday midnight labs.  

This called for more blood. In addition, they wanted to open up the wound on my lip, so that meant they boosted my platelets even more than normal. So over the course of Friday morning and into Saturday I had 2 bags of platelets and two bags of blood. I also discovered for the first time that the blood transfusions are of red cells only--the white cells are irradiated out.

The good news is--by Sunday morning--they are 1.6. Incidentally, my weight was 186.

The Continuing Saga of the Lip

My Lip, and what the next step was, was the point of hot contention for Saturday morning. I was still mad no one had explained it to me. It was Saturday, so it also meant that none of my regular doctors would be in--instead others covering for them--would be making rounds. But I was sure they would  know the story.

The big difference today, was that my lip was unquestionably less swollen. Hurray!

Main Doctor's Opinion

Around 10:45 AM the doctor covering for my main doctor came in. I explained my concerns and he explained his. The main reasons for doing the swab as he explained them were:

• I am having unexplained fevers and they want to stop them.
• By waiting they could be letting something take hold that will do more damage, and they don't want to drop the ball.
• I am taking a lot of antibiotics, and sometimes even those can cause fevers. So, if they know which things to use to target the lip, they might be able to remove some of the other drugs.

That all made sense, but I was still not 100% convinced it was all worth a new wound that might gt a new infection in an area where all sorts of things (food) could work their way in and cause problems.

Plastic Surgeon's Opinion

Now, of course, the plastic surgeon is the same one that originally suggested we not open it up. The main doctor said that of course its not really up to him though, but I did figure he knew most about the healing and issues with it. 

He said a healthy person would take 2-3 days, but with me and my really low counts he did not know. That seemed like a really long time to me.

The ID Doctor

In the end, one of the doctors (forget who) called my ID doctor and discussed it. They backed off from it for now, saying they can always go in on Monday if need be. 

So for now--new wound averted!

Fevers

On Saturday I didn't have one fever. I think the highest I got was 99--which for me is nothing. It's Sunday morning as I write this.

WATCHMEN

So, how did I spend this feverless day? Well--I'm still pretty idle and not quite for of vigor yet, so I read. I started the WATCHMEN which is also coming out as a movie.  I started while I couldn't sleep at around 3 in the morning on Friday and have spent most of the day reading it. It's really good. It won a Hugo award and is in Time Magazine's top 100 novels since 1923. 

Anyway--looking forward to the movie--but it will be a different experience--there is so much depth in this book (which is the first time at lest that I have encountered that in a graphic novel) that it will be hard to get all that across on the screen--but it looks visually great on the screen from the trailers as the link above will show.

Night Sweats

One little annoying thing is night sweats--even without fevers I still get these, which I understand can be a side effect of the chemo. I have been changing out the sheets each time, but this will be impractical once home. Its awful to awaken up drenched--you obviously don't want to go back to sleep in it.  

But there it is...

Looking forward to a nice Sunday.

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...