Surgery

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

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)

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)

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)

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)

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)

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.

1. 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.
2. My second round of chemo did not seem to cause any additional hair loss.
3. 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.
4. 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)

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)

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)

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)

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)

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.

1. We found the woolly hat. Jen had taken it with some dirty clothes to wash--hurray!
2. 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)

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)

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.

1. Hang patient one's chemo at 9
2. Give patient 2 a pill at 9:15
3. 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)

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)

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)

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

I have had a great week.

Home

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

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

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

All in all a nice break.

Doctor's visit

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

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

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

Day 26 & 27 - Tuesday and Wednesday

I am home!

The PICC

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

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

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

The discharge

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

It was great.

Home life

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

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

Visitors

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

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

The next steps

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

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

The hiatus

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

Day 26 - Tuesday

Tuesday has only just begun but I have good news!

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

Hurray!!!

Day 25 Monday

What a difference a day makes...

Bird Watching

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

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

The Day

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

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

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

And then I was gone...

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

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

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

I'll miss them.

Back to Ten

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

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

I've Got no Strings...

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

I am untied.

Wait

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

Waiting.

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

I'll keep you posted!

Day 24 (Sunday)

This was a good day.

Feeling Groovy

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

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

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

I have less energy than normal, but feeling good.

Hair

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

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

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

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

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

Food

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

WATCHMEN

Finished it. 

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

Home

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

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

Summary

In short:

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

Day 22 & 23 (Friday & Saturday)

Things are on the rise...

Blood

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

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

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

The Continuing Saga of the Lip

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

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

Main Doctor's Opinion

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

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

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

Plastic Surgeon's Opinion

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

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

The ID Doctor

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

So for now--new wound averted!

Fevers

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

WATCHMEN

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

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

Night Sweats

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

But there it is...

Looking forward to a nice Sunday.

Day 21 & 22 (Thurs and Fri)

Another day of mending...

Patient Holding

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

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

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

The Lip continued...

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

If you can believe it my lip was even bigger. 

I'll spare you a picture.

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

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

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

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

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

• My lip does not hurt.
• My white counts are going up--eventually my body can fight it off.
• Its in a really sensitive area, and will hurt, and may be difficult to heal.
• Its essentially creating a new wound where there already is one
• The new wound is in an area really prone to infection.
• I don't want to end up worse off with a wound that makes it even harder to talk or eat.

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

The Gall of it All

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

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

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

Reading

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

Fevers

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

So a good Friday...