Adrian has APL

Surgery

2009-06-10T12:19:00.002-04:00

The last procdure...

Monday, June 1st--Surgery Day

On Monday I finally had surgery for the thing that started all of this off--my Gallbladder. If you recall, it was because I was going to have my gallbladder out that they discovered my Leukemia in the first place.

Well--the journey came full circle on June 1st.

At the same time, I had my port taken out, as, I shouldn't need it again.

The surgery was, as I suppose all surgeries are, painless--mainly because of our friend: anesthesia. This time, I didn't even make it to the surgery room before I fell asleep--they said, "This is to relax you," as they gave me the initial injection, and well--I guess I was very relaxed.

The entire thing is done laproscopiically. This means they only make a few small incisions and inflate your abdomen with air (carbon dioxide?) to make it easy to work beneath the skin. (Incidentally they don't push the air out--it just eventually works its way out.)

I woke up a few hours later, the epitome of groggy, in a recovery area. All I really wanted to do was sleep, but after much coaxing and help from my nurse, I was able to drink a little and perform the few required exit tests--walking and peeing. Do those--and they will let you go.

And they did.

The whole thing took most of the day. When I got home, I slept.

Tuesday

Tuesday I was still in a little pain from the surgery.

I had one incision in my chest where they removed my port, and four incisions in my abdomen--three of those down the right side of of my belly, and one in my bellybutton, through which the gallbladder came out. The thing that really surprised me though was that there were no stitches, just a glue called Dermabond that holds the wounds together for about 5-10 days then falls off.

It even allowed me to shower.

Most of Tuesday I felt surprisingly good--other than some pain near the incisions--but by the evening I was feeling the pain more, so I took some of my oxycodone and slept...

Wednesday

And slept...

All I did was sleep-all day.

Thursday

And slept...

I was still not quite right. It was frustrating as everyone had told me that that I should feel great by Friday.

I was not feeling great.

Friday

I was not feeling great by Friday either, but I had appointments with my doctors. My oncologist told me all was well. My ophthalmologist was pleased with the progress the hemorrhages in my eyes were making--they were breaking up.

They still affect my vision but I am sure they will go away eventually.

To the Weekend and Beyond

By the weekend I started feeling a bit better but was still slow to move about. Finally by Monday I was feeling pretty good--not perfect but better. And now, I am almost back up to snuff. I slouch a little as the incisions, or maybe the muscles, beneath them aren't keen on being stretched--but every day I get a little better.

And that--in a nutshell--is that...

With a sigh of relief I can say that I have finally reached the end of the long, windy, procedure-filled road.

Whew...

The Future

And now, I am sure as much to your pleasure as a reader as mine as a subject, there really should be very little more to say about all of this.

Of course I have many more doctor follow-ups. In about 5 weeks, I should be past any restrictions from my surgery. (For that full time I can't lift anything more than 10 pounds or swim). I also have a year's worth of medications to take yet, but all in all--I am super pleased to be where I am.

The worst is behind me.

And the view from here is great!

Maintenance Update

2009-05-29T09:24:00.003-04:00

Things have gotten much better.

Since last time...

After my last update, the past few weeks started a little rough with another gall stone attack, but now, overall, things are great.

Other than the very occasional GI tract issue, I have gotten used to my daily medications. I think I may even be getting used to my weekly one that makes me super sleepy. I'm a little slow to come up with this simple solution, but I now take it at night so even if I am sleepy, I won't care.

My eye continues to be partially obscured, but I think its getting better. The shape that obscured part of my vision seems to have broken into two shapes now--so hopefully I am on the road to recovery.

Surgery

I have been waiting to write until I have some news, and here it is... I now have my surgery scheduled. Hurray!

I'll be going into the hospital on Monday at 8 AM for a 1:30 AM surgery. I'll be getting my port out, and also my gallbladdder. It's great to have this scheduled, as I feel like I can't really mend completely until all of this is over.

Both surgeries are laparoscopic. This means they are minimally invasive, can be done outpatient, and have shorter recovery times. If I recall--I should be up and about at home by Wednesday, and completely back to normal by Friday.

Hair

My hair is even coming back in.

It seems to have come in in three stages. The first was all white, and is still sort of invisible. After that, two round of dark hairs started up. It's all very thin, and I think the white hairs won't really show until there is thicker dark hair to contrast against.

Then again the white hair may all fall out--who knows?

Overall

Overall--things are good! And should just be getting better and better...

Maintenance Begins... (5/2/09-post date)

2009-05-11T20:23:00.002-04:00

And I thought this was going to be the easy part...

After the Treatment

So, I was very much looking forward to maintenance. After all, I had already been through the worst...

Induction - 26 days in the hospital and a few weeks recovery
Two Consolidations - only a week in the hospital with a few weeks recovery.

And with that done, my Leukemia was in remission (as verified with that Bone Marrow Biopsy a month ago).

So on to the beginning of recovery!

Maintenance - a year long period of taking drugs that make sure the APL stays gone...

Maintenance Begins

For Maintenance I am taking three (primary) drugs.

Vesanoid - Four pills twice daily, but, only for two weeks every three months.
Methotrexate (Trexall) - Four pills, once a week
Mercaptopurine - Two pills daily.

Well, Vesanoid is an old (and apparently sometimes fatal) friend. But the other two were new. With new drugs come new reactions--and these knocked me out...

Saturday, May 2nd

I got up, had a nice breakfast and tried out my new drugs. It was weird not taking Vesanoid, the miracle "cure-all" drug that makes this Leukemia one of the easiest to treat.

My daughter has wanted to plant some vegetables, so we went to a local nursery and picked some up to try a little container gardening. I of course took it easy as I was still not quite up to snuff, but we had a nice outing. I was out of energy and stayed in the shade while my wife and daughter planted the plants.

And it was then time for lunch. By this time I was feeling a little weird--and after lunch I lay down for a nap.

I napped until dinner, got up, and then slept another 12 hours.

Feeling Poorly

These new drugs sapped me of energy, gumption, enthusiasm and any general feeling of well-being. And it was no better Sunday, or Monday, or Tuesday. They laid me low-the better part of every day was spent in bed either asleep or awake but too tired to be anywhere else.

The Mercaptopurine targets cells that reproduce often, like blood cells, but that also means your Gastrointestinal tract. So on top of feeling out of sorts in the head, and feeling weak, my stomach was a wreck too. On Tuesday, I even had a near gallbladder attack--it felt like one, but did not last very long so I am not sure it was one--but my insides were a wreck.

And then there is the part where I couldn't (and can't) see that well. It's frustrating as I don't find it that easy to read, or spend time on the computer. I think all of it was made worse mentally by the fact the rest of me was falling a part some of the time too.

I had not felt this overall bad through either of my Consolidations.

Reading up

So, I read all of my drug sheets. My favorite line is probably...

Contact your doctor immediately if you experience... coma.

Coma--just there in the alphabetical list between chest pain and confusion. Well, if I experience it--someone will be calling--but it won't be me.

Conversations

So, I was feeling so bad, I spent some time trying to research through talking to people too--secretly hoping that someone would say I could just stop taking it. I called my Cigna RN, and she helped a little, but really she said what I was feeling sounded normal. I called my Doctor's office almost every day reporting symptoms, hoping they would reduce my dose or change my regimen.

Everyone just said I should ride it out and that I would get used to it.

I also called work--I wanted to let my manager know that my June 1st return date was too early, but that I hoped to be back my July 1st. Of course -- that all depended on me getting used to these drugs so I could be functional. My manager, and my company in general has been nothing but helpful and supportive through all of this. Sometimes you can feel a bit lost in a big company-but its nice to know after so many years standing behind it-they'll stand behind me. We had a great conversation and it meant a lot. And, it got my mind working and wishing i could be solving some problems there.

But I still had to solve my own...

Not Immobile

I don't want you to think I never got out of bed, or never felt OK. I did from time to time.

Usually my mornings were good until a few hours after having taken my pills. My afternoons were spent napping or watching TV in bed out of my good eye (a friend lent me Buffy the Vampire Slayer -- the whole 7 seasons-- and I am still only in Season One). Evenings were spent watching more TV--I just didn't have the energy for much else.

Doctor Friday

On Friday I had appointments with my doctors.

First, I saw my cancer doctor, where they also ran a blood test. My white counts were down to 3.0 from 16.4 a few weeks earlier. Apparently yet another side effect of these drugs is low White Blood counts. They say my counts are not too low, but I still need to talk to them about it as it seems too low for surgery to get my port and gallbladder out.

And then on to my Ophthalmologist. It had been ten days since I saw her, and I thought I would be seeing better by now. She checked my eyes and the hemorrhages are breaking up, but the one in the center of my vision is not yet. So at least that's some good news. :)

Saturday May 9th

I only take the Trexall once a week. So I was not sure how I would feel taking it again. Was all my fatigue just from the daily pills-Mercaptopurine?

Nope--I spent much of Saturday laid up in bed again.

Sunday-Mother's Day

Sunday was Mother's day and I was not going to let all this stop us from going out and celebrating. Jen has been through a lot herself this year, having to take care of me through all of these and still keep everything normal for Anna, and she deserved even some small recognition that I could muster today. Anna and I did the best we could, cooking some (mediocre) pancake, drawing some nice cards for her, and giving her tulips.

But the big question was whether or not we could work out a nice meal out. The place we had reservations for was for Saturday night as they were closed Sunday--and I just was not well enough Saturday. In the end, we have a rain check on a nicer meal, but we had a nice Mother's day lunch out at a pub. I just loaded up on Rolaids and Immodium and all was well.

It was a turning point

Monday - that's today

I woke up early and went for about an hour's walk. I was slow, but methodical, and covered good ground by the end of it. It was great to be moving again after a week spent mostly languishing away in bed and on couches.

After breakfast I mowed the yard and did a few other small things out there.

And somehow, even though I still felt the effect of the drugs--and still slept some of the afternoon--it was easier to push through them with something to do.

So, I am going to keep trying to do things--push through the problems--and overall hope to do better than I have been.

That's really all there is to do.

Day 8 - 22 (Two weeks of recovery)

2009-04-28T10:06:00.010-04:00

I have been resting up at home, and have neglected my blog. Sorry about that!

So here's your update--covering two weeks of recovery, starting from Monday after Easter.

The First Week Home

Overall, it was really quite nice. Each day I expected to get worse, but thankfully didn't until the end of the week as Thursday was my 41st birthday (a prime number which must have some significance to someone somewhere). I had a nice lo-key birthday celebration with my family, and as you can see in the pic below, I had my cake and ate it too.

(I never understood why it is considered greedy to want have your cake and eat it too. Isn't that why you want to have your cake in the first place? To eat it?)

And if anyone should wonder if forty is rough, I'll have to say yes--I mean you get cancer, your hair all falls out or turns white, and you spend a lot of time in the hospital. :)

Forty-one promises to be all uphill though...

Drug Confusion

One little snafu of the week was with my prescriptions. I was running out of the all important Vessanoid on Wednesday, and the local pharmacy said the doctor's office wouldn't let me refill it. After many calls and much running around I finally worked out the story.

Apparently, my doctor contacted my insurance company and tried to setup some prescriptions for my maintenance period (the "phase" that starts after this, my final consolidation.) I have a "patient advocate" at the insurance company--an RN. She noticed that the dosing seemed way off, and asked their doctor to speak with my doctor.

Well, as I have said all along, I had been told I would be taking vessanoid for a year. Not true! I take it every 3 months for just two weeks. I also will take two other maintenance drugs--one once a week, and the other every day. Of those, my doctor had given me double the dose of what I should be taking on one of, which took it to unsafe levels.

Thank goodness for my advocate.

Meanwhile, my doctor's office had told me none of this before I ran out of Vessanoid. I managed to get the Vessanoid over-nighted in the mail, so I only missed one dose.

The Blood Goes Down, The Blood Goes Up

By Monday of the second week was my low-point for the blood. I had a white cell count of .2 and a 6.6 hemoglobin. I had also managed to develop a significant cough that wracked my body and kept me up nights. On Tuesday I had a transfusion--two bags of Red Blood Cells and one of platelets. I managed to get all this without getting a fever--so all was well--or so I thought.

Vision Trouble

On Wednesday (and maybe it started on Tuesday?) I started having blurry vision. My eyes were sensitive to the light, and it was a little difficult to focus well enough to read.

By Thursday I called my doctor about it, and Friday when I saw her for my checkup.

After responding to my compliment about her cheery skirt by telling me she was using it to disguise the fact that she was grouchy because she was going to be on call that weekend, we got down to business. She told me she hates being on call. I had a few questions for her and eventually, we talked about my vision. She said: "People sometimes get blurry vision from chemo, and no one knows why." She then told me it could take up to three weeks to correct itself.

I had another aspect to my vision problem though that she was not familiar with. If I close my left eye, in my right eye I had a spot on my vision--the kind of thing you might get for a moment if you rub your eyes, but it wouldn't go away--it was blocking my view. She did not know about this, so suggested I see an Opthalmologist.

That was all on Friday. It was not so debilitating that I couldn't get around obviously, but I had taken to watching TV with one eye closed. On Monday, I saw an Opthalmologist.

Vision Quest

The Opthalmologist was really nice. She shares an office with her brother ("Do you have an eye or heart appointment?") near the hospital.

I have not been to an eye doctor since I was a kid. We began with the ole eye chart test. I started by trying to read it with only my right eye. While a few letters on the left side of the chart were legible, most of them on the right were obscured. If I looked away, I could catch a glimpse of the letters sometimes, and they were clear, but basically something was blocking my vision. When I tried with my left eye, I could read the whole chart without any trouble.

(Incidentally I am writing this with my right eye closed.)

All the gear and resting your head in straps while they shine bright lights in your eyes was sort of new to me. She did a lot of that, and a lot of looking at my eye through lenses. She quickly ruled out cataracts and glaucoma, which was good to hear, and then discovered what it was.

Pre-retinal hemorrhaging.

Sounds scary, no? Apparently when my blood counts were so low, I had blood hemorrhages in my eyes. there are several little hemorrhages in both eyes, but they only obscured my vision in my right eye. The good news, is they should go away on their own as my blood levels improve.

I have an appointment in 10 days to check them though.

How, YOU doin'

At this point, I am doing pretty well--feeling a little stronger every day, and I hope to start some minimal exercising this week--as in walking and maybe a few very light weights to build my strength back up to normal.

I am definitely past the worst of it. Weakness, bad eyesight, etc. can sometimes be frustrating, but I know everything from this point on should just keep getting better.

On Friday, I will get another blood test, and am optimistic that that will mark the end of this consolidation. Once its done, I start maintenance for a year--which basically consists of pills and doctors visits.

At some point, I still need to have my gall bladder out, and get this port out. I'm hoping to do both at the same time.

Thanks for Reading!

If you have made it this far, you have read through a lot! Reading all of this may have been as difficult as going through it. :) You know how wordy I am...

I really appreciate that you kept up though, and went through this journey with me. It meant and means a lot that you were interested and willing and I am so pleased I was able to reach out to friends and family this way. It has been a wonderful way for me to document it, process it all, keep myself occupied, and share it with those who care.

I will continue to update this blog occasionally to keep you updated, but, like this post--they may be few and far between as, hopefully, there will be a lot less news.

So, thanks again--stay well--and that, for now, is that...

Days 5-7 (Saturday, Easter Sunday, and Monday)

2009-04-14T10:48:00.003-04:00

In the end, it was the end...

The Day Off

Friday afternoon through Saturday was my day off, and I managed to occupy my time without too much trouble. I finally met the doctor I was originally referred to, as he does rounds on weekends and he seemed great. He noted my Hemoglobin was a little down, so he suggested I get a bag of blood on Saturday to bolster me before being discharged. It could delay the time til a transfusion during my next outpatient stint.

So I got some blood Saturday afternoon as well.

Eating, or a Lack Thereof...

My aversion was real. The pink trays just made me nauseated. If I saw them, smelled them, or even thought of them I wanted to retch. Sometimes some of the food on them was not even that bad--but the smell of the hot food was awful. Fortunately, I ordered some pretzels which helped a lot--I had two bags of them which meant I had 200% of my daily allowance of sodium (which may have actually helped with the chemo induced diarrhea).

Also, my doctor covering for the weekend just decided to put me on nausea medicine full time, so I got Zophran (sp?).

Last Rounds of Chemo

The last rounds of chemo were delivered that night and the next morning. I took them without a hitch.

Leaving

My nurse on Sunday was a nice guy. He took care of the chemo and worked to get me out of there as fast as possible. I signed all my discharge papers and packed up. He called "Transportation" to wheel me out in a wheelchair. I felt perfectly able to walk out on my own, but was willing to wait, at least for awhile...

After 15 minutes I asked if I could walk out on my own.

After 2o minutes I said I really wanted to go--that I could have walked home by then.

After 25 minutes I said I was giving them 5 more minutes then leaving.

After 30 minutes, I walked out.

Jen met me and I was whisked home. Hurray!

Easter Dinner

I was hungry when I got home and proceeded to eat 3 1/2 pieces of leftover fried chicken from a picnic and 4 pieces of toast. That night Jen made a nice Easter dinner of ham, potato and green beans and I had some of that too. I paid for my gluttony with several unpleasant trips to the bathroom and immodium.

Monday

Went pretty well. I had a visit to my doctor's office set up to start neupogen and get my labs.

As expected, my counts are dropping and will continue to drop until they hit bottom, probably around this coming weekend. I will be going for neupogen shots every day, and will see my doctor on Friday.

And for now--that is that. Rest and recovery.

I am glad to be home!

Day 3-4 (Thurs and Friday)

2009-04-10T18:56:00.002-04:00

Again the chemo hit hard...

The Chemo

I am down to my last kind of chemo that is given every other day. They gave it to me at 9 PM and it runs for 3 hours. Then again 12 hours later. Its not supposed to cause nausea, but it did for me. Spent an hour vomiting after they gave it to me at 9--I finally called a nurse and she had meds for me that calmed it. My fault for not calling sooner.

Mostly I sleep.

Aversion

Forget embracing the mush. I think I have built up a psychological aversion to the pink tray of food. I don't want to open it or think about it. It makes me queasy doing so. So I am sticking to mostly pretzels, ensure, and water.

Done with That

But I am done with all that-and now comes the weird free day. I finished my chemo for Friday, and get nothing until 9 PM Saturday.

I just sit around.

Day 1- 3 (Tuesday - Thurs)

2009-04-09T13:50:00.000-04:00

The chemo is kicking my butt...

Chemo

Chemo started Tuesday, and its Thursday as I write this. Wednesday is a vague blur that I mostly slept, and occasionally vomited, through. It's been really rough this go round, but it does make the time pass.

I did manage to stay up for a whole hour to watch Lost--but it was not easy.

Nausea

The chemo caused the nausea, which caused the vomiting. I have barely eaten anything since most food seems repulsive to me at the moment. (A whole lot of that is because much of it is repulsive--even if I felt fine. :) ). I ate 6 crackers on Wednesday that I threw up, and managed a pancake and half a bowl of rice crispies this morning. Sometimes even talking about food makes me ill.

I am on saline today since I am not drinking anything either.

I wrote the next two bits on hair and food Tuesday night after my other Tuesday post--back when I had some energy-so they may feel-perky for someone so run down. I figured I'd get to posting them before now--but have not had the energy to even get to the computer.

Hair Tidbits

There are lots of little curious things about my hair that I can share.

Of course they initially said all of my hair would fall out. However only the hair on my head and face did, and then they seemed to change their story that it was different for everyone.
My second round of chemo did not seem to cause any additional hair loss.
The hair on my head has started to try to make a comeback. If you look in yesterday's photo, you'll notice my scalp is paler than the rest of my head, but part of the reason is that I think there are a lot of little tiny white hairs on the top of my head--hard to say for sure just yet.
When they put in my port, the shaved part of my chest. They shaved it symmetrically even though they only worked on one side. As one nurse put it, they shaved it "hiney shaped". (Hair down the center of my chest but each breast is bare.) The hair is VERY slowly growing back.

Food tips

I am back on hospital food again, and I thought I would share this one important hospital tip:

For your entree, order what is naturally very good when mushy.

You see, when all this food is prepared en masse, and then put in the hospital tray, well the tray lid is sectioned and kept a little warm. Served food that is in a covered dish sits in its own steam and becomes mushier and mushier until you get it. Some things do ok like this--generally these are the things that you can put into your fridge after cooking them and look forward to having again some other time.

These include things like:

Baked Pasta (Lasagna, Manicotti, Stuffed Shells)
Mashed Potatoes

But other things don't do well in this environment, such as:

Peanut Butter and Jelly Sandwich (which is not good hot anyway)
Hamburgers
Cooked Vegetables (that just get mushier)

So, if you should ever find yourself in a hospital (and I hope you don't) go for the stuff that tastes good as leftovers. Embrace the mush and choose mush first!

Encouragement

As always, I want to thank all of you for your kind words of encouragement through cards, and facebook, etc. It all helps and is very much appreciated!

The Final Round

I saw my doctor today and she told me the Bone Marrow biopsy came back and all the news is good!

That's great news of course. This means the treatments have been effective--which is great to hear. It would be rough to go through all of this to only have to go through it again.

When she first told me the news that I had Leukemia, she said, "You won't appreciate this yet, but you only have to go through two consolidations. Normally you go through three of four."

She was right. I didn't appreciate it--and now, how I do! Regardless of how rough all this is--it's great to know its the final round. It really is wonderful to be on the home stretch.

Second Consolidation, Day 1 ( Tuesday 4/7)

2009-04-07T12:53:00.010-04:00

Back in the saddle again...

Monday's Doctor Visit

So, on Monday, 4/6 I saw my doctor again. Labs were drawn in her office and everything looked like it was on the right track--that is all my blood was recovering nicely.

Which means its time once again to knock it all back down.

The plan is to get chemo for five days and then go on the outpatient-until-you-get-a-fever program. I should be able to go home Easter Sunday.

Smooth and Efficient

I was to check in on Tuesday, April 7th. Now, if you have been following this at all--check in is hardly smooth. One time, I waited 5 hours after checking in just to get a room and even then waited a day before anything happened.

But this was different. They called me at 9 in the morning and said they were ready for me to check in. I checked in quickly, but in the past they then had to call a transporter to take me to my destination. (one time that was around the corner--I waited 15 minutes to go around the corner.)

But this time they said I could walk. So--I went up to the 10th floor, where the rooms are dated and dull and had a great surprise!

New Room

The last time I stayed here I got perhaps the worst room ever. Nothing worked and parts of cabinetry was broken. It was the pits. However, I knew that the area where I first stayed, lo the many weeks ago, had been redone. I was optimistic that I would get one of the redone rooms.

And I did!

The re-done rooms were opened yesterday, and in fact I am the inaugural patient.

But, the room I got, was the same room I had when I checked in the first time. It was so much nicer redone, but it was still tiny. With five other rooms open, it did seem a bit weird I was put in the smallest.

Thankfully Jen encouraged me to ask about the other rooms. I joked with the nurses about cashing in my frequent stay reward points for a room upgrade. They offered me the biggest room (which is REALLY big) but I felt that was a little greedy. I went with a nice sized room (for the hospital) which is perfect for me. Its great--it overlooks the same lake as the Bone Marrow Transplant floor, but now from 7 floors higher. Great views, freshly painted and redone room--I'm really lucky to have it.

Jen got me some coffee and a muffin as I settled in.

A Needle in Every Port

My nurse accessed my port--still weird to have someone press a needle into your chest.

I figure you all are due a picture, so here I am in my new room with my port accessed...

The Pelvic Bone is connected to the Pain Bone

Before getting my chemo I had a Bone Marrow Biopsy.

Owwww!

The Lab doctor came up to give it. Basically they stick a needle into your pelvic bone just to the left and down from the small of your back. The doctor said for some it hurts more and others less, mainly based on how strong the bones are. For an old woman, with soft bones, she might not react.

I am however middle aged man with strong bones, and maybe a bit of a pain-wimp (she said my reaction was not unusual and to next time ask my main doctor for some pain medication first). Wow did it hurt. First they numb the area with something that really hurts--they do that three times--and it hurts each time. Then they drive a needle into your pelvic bone while you are gripping the bed with all your might and screaming into your pillow as a nurse rubs your arm and says take long slow breaths. And then they keep saying "go to a happy place," and "I'm sorry I'm causing you discomfort," and "Its almost over." (That seems like the kind of thing you shouldn't need to say so many times if it really is almost over.)

Glad that's over.

(Apparently one patient bit a nurse during this.)

The rest of Tuesday...

Well--there will be more to report from Tuesday as I should start my chemo later. But I will update you all in another post.

Days 21-28 (Tuesday - Sunday - the "good" week)

2009-04-06T21:42:00.000-04:00

All's well...

The Good Week

So, these days were fairly uneventful, but wonderful. I had a great time being at home, but while I was supposedly in my good week, I know some of my counts besides my white blood count were low--so it still felt like I was recuperating.

Generally it manifested itself as low energy.

In fact Thursday, I think I was only awake for meals, and then crawled back into bed.

Visitors

I really didn't even have many visitors or do much as I was nervous of catching something before going into the hospital that would then keep me there. I'm hoping it is me being hyper-vigilant and not just paranoid, but fingers are crossed that I have another good round.

On Monday, my brother inlaw's family came to stay for a night or too from across the country. We had a wonderful dinner and evening. eve though I did not get to see them for long, it was great to see them and I am sorry I did not have more time.

But on Monday, I also went to the doctor, which lead to me heading back to the hospital Tuesday for my final round of chem--hurray!

Thursday - Monday (Days 16 - 20)

2009-03-31T14:37:00.003-04:00

Good news!

Blood Transfusion

So, on Wednesday I scheduled a transfusion that I then had on Thursday. This was my first outpatient transfusion, and it went well. I shared a room with several people and some of their guests, but other than being noisy, it was a smooth 5 hours of receiving irradiated blood and platelets.

The big thing was that I did not get a fever.

Weekly Checkup

I spent the weekend as a hermit and it seems to have paid off! On Monday, I went in for a regular doctor visit and my White Blood Cell counts were high enough that I could cancel my daily neupogen shots, and start my week of freedom.

My doctor told me she has never had anyone recover so quickly from a round of chemo (17 days from the start of the chemo) and more to her surprise, she has never had any outpatients go without contracting a fever. My isolation seems to have paid off!

A Reprieve

So, now I am in the week of freedom between my chemo-therapies where I can do essentially what I want. Some blood counts are a little low, and I am not used to exercise, but I am basically my own self again, minus some hair and energy.

On Monday I go back for my next checkup and to schedule my next round of chemo for Tuesday. That will be the last round!

Then its 5 days in the hospital and 14-21 days of recovery (or maybe just 12? :) ).

Woohoo!

Friday-Wednesday (Days 10-15)

2009-03-26T10:44:00.003-04:00

Time for an update...

Resting

So--its been a few days since an update. In general, everything has been going well--and I have not written about it since there was not a lot to say except "Everything's going well". I am living the life of a hermit--staying home--seeing almost no one--and resting.

I missed out on some things I wish I could have done--but that was the worst of it.

I have one outing a day, where I drive up to the hospital and go to the Ambulatory Care Center (or something like that) where I get my Neupogen shot.

So not a lot to tell.

Blood

On Monday I went for my weekly doctor visit. They took my blood, and though my counts were low (I recall my White Blood Count being 1.4 and my hemoglobin being 8.8) they decided it was not time for a transfusion. I visit the doctor's office every Monday, Wednesday, and Friday--though Wed and Fri are just for lab work.

It's expected for my blood levels to be low, and to be decreasing, all before they build back up.

On Wednesday, I went back for my labs again. This time my counts were lower.

White Blood Cells: .6 (normal range is 4.8 - 10.8)
Hemoglobin: 7.8 (normal is 13.8 - 18.0)
Platelets: 10.0 (normal is 159 -388)

And so that means its time for a transfusion...

Type and Cross

Before you can get a transfusion, they need to check your blood type and do a crosscheck among donors to find a match. They take your blood, then sepnd a couple of hours analyzing it and finding a match.

To have teh blood drawn I had to go down the hall to a lab where they do all sorts of hospital outpatient work.

My nurse took my blood from the inside of my elbow (is there a term for that? elbow-pit?) and put some gauze on it. I left, and wandered back to the car where I notice my arm felt wet. The gauze was sodden. I walked back to the lab, and by the time i came in blood was streaming down my arm. They took me right in, changed the dressing,wrapping the bloody hole all up with a pressure bandage.

With such low counts clotting is a problem too of course.

The strange thing was it was not my first puncture of the day:

3:30 - Neupogen shot at 3:30 near my left tricep - no bleeding.
4:00 - Drew blood in left elbow-pit? for lab work - cotton ball and band-ade stopped bleeding.
4:45 - Drew blood in right arm for type and cross - gauze was not enough...

Go figure.

Moms Cooking

Over the last week or so several moms in my wife's moms club have been bringing us meals. We are really so fortunate to have so many so willing to help us out. Everything has been delicious and a big help!

Thanks all!

Nurses

A lot of people have commented on my encounter with a couple of nurses who seemed a bit detached from the people-side of their work.

Just for the record, I think they were an exception, and, I think part of my reaction was because of my own grumpiness and lack of patience. I was in a bad mood, impatient, and I am sure that tainted it all too.

In general, I have been in the care of a lot of wonderful nurses, and am really impressed and surprised by how much of themselves they give to everyone in their care.

Money

So--I am very fortunate to have insurance, otherwise we would be bankrupt. It's interesting to see how this whole process works, and the numebrs involed are a bit mind-blowing.

For example, here's an approximation of one line item...

My doctor visits me in the hospital for 10 minutes and checks over my charts. She then bills $180 for that. Now my insurance has a negotiated price of $90. They pay 90% ($81) and I pay 10% ($9) until I reach my maximum out of pocket of $1000.

First--it's amazing that the negotiated price is so different than the Bill Gates price.

Second, there are a ton of little charges like this, from specialists who read special parts of my charts to my regular doctor. It's a lot of things to keep track of, and without the insurance company--the bills would be astronomical and a hassle to manage.

But those are just the bills that are not from the hospital itself.

The big bill is from the hospital. It is currently listed as "In Process" on my insurance account, which I guess means it's either still "open" as I can continue to add to it through outpatient services, or that they are reviewing it to make sure it is accurate/lowering things to the negotiated prices. The bill from the hospital, currently, is around $275,000.

Yowza.

I'm not saying it's not deserved, or not accurate, or not apprpriate.

But holy cow...

And my treatment is not even done....

Day 8, 9 (Wednesday and Thursday)

2009-03-19T22:58:00.003-04:00

I am home.

Coming Home

It's wonderful being home.

This trip to the hospital, though much shorter, was much harder on me emotionally. I think I was down most of the time and sometimes pretty low. Everything from the room, to my little altercations along the way, to my exhaustion impacted me, but I think I was just more emotionally negative too. They said one of the chemos can do that--but if it did--it was just one of the contributing factors.

When I got home though I was so shell shocked from the whole thing that it was not until today that I started to feel normal or feel like I was happy to be home. I was happy to not be in the hospital, and happy to see Jen and Anna, but I could just not absorb my surroundings because I was so inwardly focused. Not sure if that makes sense, but I was uptight and closed off, and still down.

Home

It's great to be home now though.

Even though I spend most of the time laying around without much energy--just watching the trees out the window or a TV show with Anna or just staring off, resting--it is great to be with the ones I love in my own space.

It's a little hard not being able to participate in everything like I would like to. Even though I am home, I am still sick/recovering, and can't got to the art festival with Jen and Anna, or to a community fair this weekend put on by a group I am an active member of, or a community meet and greet this week, or even to the park or a restaurant.

All of that is a little disappointing, but really--small potatoes compared to the happiness of being home.

Outpatient

I went for my first outpatient visit today. I will be getting my neupogen shots, to kickstart my white blood cell production, every day at the outpatient center. It's wonderful living so close to the hospital because it is an easy trip.

The office is great--very calm and seems to run smooth as can be. You have an appointment and actually get seen by a nurse within minutes of arriving. So you just check in, get your shot, and go.

I am convinced it's so smooth because it's all run by nurses. :)

Good News

Oh, and some small things I may have forgotten to mention.

We found the woolly hat. Jen had taken it with some dirty clothes to wash--hurray!
Night sweats seem to have been a side effect of antibiotics, not the chemo, because I have not been having them for some time now. (Of course it could have been the neupogen too I guess--will have to wait and see, but for now at least, it's nice to wake up dry.)

Recovery

So--other than my daily neupogen excursion--I will be here, at home, puttering around, avoiding diseases, resting up, and mostly sleeping, while my bone marrow does its thing to make me some new strong blood.

Days 5-8 (Sunday - Wednesday)

2009-03-18T09:33:00.003-04:00

Alas and alack! I am on the verge of departing the hospital and have been remiss and have not been updating my blog!

Mainly I have been way too lethargic to write it up...

But I will correct this now.

Sunday

So, by Sunday I was really wallowing in my sadness and grumpiness.

Fortunately I was also very sleepy, so I slept most of the time and few had to deal with it. It does not escape me that I am on day five of my five day stay.

I had a great nurse--and really continued to have them throughout my stay--and that and a little bit of energy brought my spirits up by the evening.

I got out of bed for the first time in a couple of days and got on the computer for a short while. A small victory and by the end of the day my mood was much better.

Force Feeding

One thing that was still affecting me was my version of nausea. I never really got a queasy feeling, and only occasionally a slight gagging feeling when I smelled the food they brought me (but everyone might get that feeling with some of this food--ba dum dum), I just was not interested in eating.

Now if you know me--this is most uncharacteristic.

But--nothing appealed. I would eat, because I was supposed too, and some of it even tasted pretty good, but I just didn't really want to eat. My body was telling me to stop--it's not interested and stop swallowing that stuff.

No repercussions (like my body wanting to vomit).

Its just hard to eat when everything is telling you not to.

Monday and, well, Tuesday, and, well, Wednesday too

These three days, much like Sunday, had some periods of utter exhaustion where it was all I could do to muster up the energy to pee into a jug, and some periods where I felt pretty good and could make it to the chair and use my laptop.

TV, it isn't just for TVs anymore...

I never did get the TV to quite work, but I did reacquaint myself with Hulu and caught up on Dollhouse. I'm really liking the premise and the "business" of it. I just wish we could focus on the premise and some of the other operatives cause I don't really care much about Echo the main character.

But there it is.

And if you like Sci Fi and for some reason I have never told you to watch Firefly, all the (14) episodes and the follow-up big-screen movie, Serenity, are on Hulu right now.

Visits

Jen visited every day I have been here, and that was wonderful. We talked about all sorts of things, and had great visits--I really needed them.

Almost home...

As I write this, it is Wednesday, I am on my last bag of chemo, and I will get to go home.

We are having to work out some billing questions on Neupogen shots, whether to do those at home which is through a prescription or outpatient. Apparently they are pricey and if I do outpatient, I think that they are covered 100%, unless its still through a prescription--I don't know--its just a little more of the big insurance puzzle.

Anyway--after this bag of chemo and once we know how I am getting neupogen, I think I am good to go...

What's Next?

Glad you asked!

Over the next few weeks my white blood counts and neutrophils, and other thongs in my blood will collapse down to minuscule levels, and I can catch a cold if someone sneezes upwind a block away. I'll be doing my best to avoid diseases and their carriers (namely people with colds and children--who carry them in spades) and sequester myself away.

If I can make it through the 2-3 weeks, to the point of having a healthy white blood count without catching a fever, then I get to stay home the whole time.

However, if I do "spike" a fever, I need to come back into the hospital to be monitored and presume I stay until my counts are high. (As the Infectious Disease doctor said to me regarding fevers and my treatment: "It's not a question of if, it's a question of when. You will get a fever.")

And after those two to three weeks, whether at home or in the hospital, once I have a healthy count, I get a week break to slowly start to feel normal again.

Then I do this all again.

Hopefully for the last time...

Day 4 (Saturday)

2009-03-15T19:49:00.002-04:00

Day 4 was mostly slept through

Sleep

I had no energy. Not to eat, not to open my laptop or read or watch TV.

Compassion

I discovered that not all nurses have the same level of compassion. It could be for any number of reasons, from a bad day, to doing it for too long. But my nurse on Friday night made me realize that for her, she is just completing a task list.

Hang patient one's chemo at 9
Give patient 2 a pill at 9:15
Ask patient 3 how he is feeling.

It was clear she did not care about me personally in any way.

In fact no nurses on the floor have said "Oh is that a picture of your daughter? How cute?" or any of the personal type of stuff that was so common on the Bone Marrow Transplant floor. Even if they don't care--it at least gives the appearance.

The same was true Saturday. I had a very efficient male nurse. He was fast and effective, but I could have just as easily been a car as a patient.

Getting two of these nurses in a row is disheartening.

All of this lack of caring and compassion made me sad.

Hair Hurts

Saturday night it was time to change the dressing on my port. This mass of tape and gauze sits on my chest within a nice patch of chest hair.

Removing it was excruciating. I had to take breaks as we (the nurse) and I worked our way around the edge trying to take it off. She tried cutting some hair with scissors. It was all awful.

As she put on the new dressing, she shaved away some hair, but not the hair under the dressing--which means I think have to go through all of that again.

I dread it.

All of that left me in pain.

Day 3 (Friday)

2009-03-15T19:46:00.008-04:00

This day went fairly well until the evening.

Pre- Op

It all began with a ride to the pre-op area. Though I wasted a day and a half sitting in the hospital for no reason whatsoever, I was glad I was finally getting my port installed, so Chemo could begin.

The person sent to get me was a young goofy garrulous kid who was as kind as could be, and eager to tell me about himself.

The Ride

He started with a yawn and said, "Oh I guess the caffeine hasn't kicked in yet. I knew I had to get up early this morning, but I was writing away last night thinking 'Boy this idea is good, I need to keep going' and so I did."

So I felt obliged to nibble at his oh-so-obvious bait.

It turns out that he is writing, as he tells me, "a book called Intolerance--well its really a collection of short stories. Its about forbidden love through the ages--Babylon, Egypt, Rome and the present."

Somehow I question the authority of the writer--but maybe I am way off base--I wish him the best of luck.

He also went on to tell me about a relative who's a bee keeper and various other stories. He's a very nice guy who means well.

Getting Ready for Surgery

I made it to pre-op where a very nice nurse got me all prepped. I watched a little "Who wanst to be a millionaire" which made me think of Slumdog Millionaire.

Everyone involved in the surgery stopped by my bed--my surgeon, my anesthesiologist, and various others, and eventually the nurse anesthesiologist gave me a little something "for anxiety" in my IV drip.

I pitched my idea of anaesthetising whole airplanes for long flights so people can just wake up at their destination, and she thought that was great. I moved over to the operating table and...

Recovery

Some time later I woke up in recovery. I had a nice nurse here too, who got me ready to go, then lined my bed up in the beds-waiting-to-go-back-to-their-rooms area. Felt a bit like you were in a ride, waiting for your car to reach the front.

I was wheeled back to my room where I mostly just slept.

There was one small tragedy of it all. Somewhere, somehow, on this journey or while out of my room, I lost my cozy warm, woolly hat. Fortunately I had not brought the one a family member knitted for me (its too wonderful to risk here) but my woolly hat was gone...

Nighttime

The night things got worse. I had a nurse, who at least from where I sat, was terrible. She just moved too fast--working on her task list and barely really communicating with me. She'd ask questions and talk over my answers. She tripped over my IV (which is now attached to my port in my chest) and it yanked so hard it pulled me while I yelled out in shock. I realized they never made my bed after surgery (I had no top sheet or blanket, just a loose blanket). Any other nurse or tech would have made the bed--she threw a top sheet and a blanket on my bed and did not tuck them in. When she was complaining about being written up about something she said, "Nurses are very busy, we make mistakes." That may be true, but I suspect she makes more than most--and I am not sure I am the audience for that comment.

She made me angry and frustrated.

Chemo

Oh and she also started my chemo. Start the countdown--five days.

I get two types--one can cause neurological problems so I have to sign something that shows that I can sign still.

A little scary but they say not to worry about it.

And eventually I went to sleep.

Day 2 (Thursday)

2009-03-12T23:54:00.002-04:00

Nothing happened.

No surgery

I was supposed to have surgery, but I gather there were several emergencies and in the end, well, there was no time for me.

So--I had a day in the hospital for no particular reason.

And that was Thursday.

Day 1 of the First Consolidation (Wednesday)

2009-03-12T09:17:00.002-04:00

Ding, ding, ding--Round Two!

So--its time for round two, which is called a consolidation. I basically go through the whole process again, but there will be a few differences.

Chemo - is five days instead of seven.
Recovery - is outpatient until I get a fever and then I am back in the hospital.
Medication - will be given through a port instead of a picc.

And that is that is it.

Admitting

So, I got a call on Wednesday that they were ready to admit me to "Admission Holding". This means they can bring me in and take blood and such, but that they don't have a room for me yet.

So I arrive, fill out some paperwork, and am taken to a room where I sit and wait. I arrived at the hospital at about 1 pm, and was in that room until 6ish. Quite a long wait in the end, but I had my laptop so stayed occupied.

They hooked me up with an IV to draw blood, and I doubt they will use it again--I suspect its too small for surgery (for when I get the port) and I am not taking any medication, nor are they drawing more labs. So it hurts a little--and sits there unused. Oh well, not a big deal.

My Room

When I finally get to my room, I am put in another of the narrow rooms with a bed that faces away from the window. They are renovating this floor, and its clear that they have pretty much given up maintaining it from the list of tiny issues:

My bed doesn't work--it doesn't raise or lower (they have swapped it out).
Some fluorescent lights hum horribly loud.
The TV goes "tick, tick, tick" when turned off--so I unplugged it. (The clock also does that so loudly that I pulled out the batteries to sleep :) ). Also the TV remote barely works.
The drain in the shower is not bolted down.
There is a cabinet drawer without a face--so it just a empty cavity with nails sticking out.

So little things--but they all make the place feel pretty run down.

My view is nice though.

NPO

The info about the next steps has been pretty vague. At some point on Thursday I will go to surgery to get a port. I went NPO (no eating) as of midnight to facilitate this, but am still not sure when surgery is.

After I get my port, I get chemo, and then run through the same process.

And that was Wednesday.

Doctor's visit

2009-03-09T22:47:00.002-04:00

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

2009-03-04T10:12:00.003-05:00

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

2009-03-03T09:04:00.002-05:00

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

2009-03-03T06:16:00.004-05:00

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)

2009-03-02T08:52:00.004-05:00

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)

2009-03-01T07:26:00.003-05:00

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)

2009-02-27T20:41:00.003-05:00

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)

2009-02-26T18:58:00.003-05:00

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)

2009-02-25T19:42:00.002-05:00

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)

2009-02-24T15:30:00.002-05:00

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

2009-02-21T15:40:00.002-05:00

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

2009-02-20T12:14:00.006-05:00

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

2009-02-19T08:36:00.003-05:00

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

2009-02-18T10:26:00.002-05:00

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

2009-02-17T13:59:00.004-05:00

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

2009-02-16T15:40:00.003-05:00

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

2009-02-15T12:52:00.004-05:00

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

2009-02-14T08:24:00.001-05:00

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:

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.

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?)

2009-02-13T21:02:00.001-05:00

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?

2009-02-13T09:32:00.003-05:00

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

2009-02-10T21:49:00.007-05:00

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

2009-02-10T20:47:00.002-05:00

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

2009-02-10T17:04:00.000-05:00

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

2009-02-09T20:44:00.002-05:00

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

2009-02-09T11:21:00.002-05:00

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

2009-02-08T18:42:00.000-05:00

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

2009-02-08T11:02:00.002-05:00

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

2009-02-07T11:10:00.005-05:00

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

2009-02-05T10:35:00.002-05:00

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.