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.