There and back again

There is never a dull moment around here. 

Last night around 8:00 Alisa told me to turn the heater down.  She was feeling hot.  I complied and then she asked me to take her temperature.  It was 100.4.  I am not clear on all the reasons but when they discharge us from the hospital they are very clear that a fever is a serious condition when someone has undergone chemotherapy.  Alisa debated calling the on-call doctor at Huntsman and we decided to wait until this morning.  She gave me clear instructions to "watch her temperature throughout the night."

So we did.  She was 99.5, 100.7, 101.0, etc.  This morning we read the discharge instructions that explained we should call with any fever over 100.5.  I pretty much keep my mouth shut during this because my gut reaction is to just "tough it out" like with any cold or flu or anything.  I do realize this is different, hence the silence. 

Alisa called and I talked (because she kept dozing off trying to explain the situation).  The doctor decided we should go to the emergency room so they could take some blood samples/cultures to check for infection.  I told Alisa we needed to go to the American Fork emergency room.  She said she would rather go to IMC (Murray) because it is closer to Huntsman in case she has to be admitted.

We arrived and we had a pretty good emergency room visit.

1. We had the same doctor we saw back on New Years Eve a year ago when Alisa had a horrible reaction to IPI.  He seemed to remember us, but maybe he is just always nice.
2. We had some great entertainment.  The guy across from us kept yelling things I couldn't understand, but I did understand the nurse when she commented "I am not going back in there  just to be punched in the face again."
3. We watched a pretty good basketball game between Louisville and North Carolina

The medical news was...complicated.

1. The did a CT scan of her abdomen/chest and noticed fluid in her right lung.  The same lung that was drained 10 days ago.
2. They gave us the option to be admitted to the hospital and have them drained, or to get them drained and then go home.  We chose the go-home option. We waited for the procedure.
3. The blood work came back and showed her INR was 2.2.  I don't know what that stands for but it indicates how well her blood is clotting like it is supposed to.  Anything above 2 means they can't do the thoracentesis, because of the bleeding risk (high INR number means the blood is not clotting like it should.)
4. They were confused about why her INR would be high, because she is not on any blood thinners.
5. They were also confused about the fever because there was no sign of anything causing the fever.  Nothing near her incision, nothing on the CT scans.
6. The ER Doc spoke with Doctor Grossmann and decided that the best thing was to admit her to Huntsman so they could watch her and try and make some decisions about what to do.
7. We laughed.  Maybe it was just me laughing, but what else can you do.  I guess 2 nights break from the hospital is better than none.

We left and went to Huntsman.  Good thing we didn't go to American Fork.  They are going to watch her tonight and then try and drain the lungs in the morning, possibly giving her something to boost her blood clotting (fresh frozen plasma, I think they said) before the procedure.

One more thing happened that I can only call the small mercies of our Lord.  Alisa was pretty hungry and thirsty by this time and so we hit the Chik-fil-a for a little dinner.  For the most part I can contain my emotions (at some level it is probably unhealthy pride) but as we pulled up to pay, I handed the guy my credit card and he said "You don't have to pay sir, that person in front of you paid for your dinner." I didn't exactly break down sobbing, but it was obvious I was touched by the gesture.  A few minutes later the manager came up and gave us 2 free meals certificates and said "Sorry about the long wait, enjoy a couple of free meals."  I don't know if he was doing that for everyone, the wait might have been a little bit long for Chik-fil-a, but I was impressed (and actually held myself together this time).  So thanks to the person driving a car with a USU Aggies license plate for buying our dinner, I doubt you knew the small kindness you paid us today.  And thanks to Chik-fil-a and their employees for being just as considerate and kind.

This will be brief, and probably disoriented (today I asked someone what they were planning on getting their kid's for Christmas this year).

We get a bunch of laughs when it's clear I am way out there.  I there was nothing to give me clues (poster, paper

My abdomen remains distended, may be getting smaller.  its hard to feel there is a lot of improvement when you spend your day in pain and throw up, but I can't deny that I feel generally more human.

I could write all day, but seriously I have no idea what I am talking about.

thanks for all your continued support, wish I had a clue what was going on most of the time.

(sorry I was supposed to post this for Alisa yesterday - Josh)

Home - Finally

It looks like we are going home today!

I am pretty excited.  We probably won't get out of here until the afternoon or evening, but I am  already packing up our stuff.

Her pain has continued to get better and I am confident we can work on the nausea at home as well as we can do it in the hospital.

We will be back in Feb 9th for another week of bio-chemotherapy.

Thanks for all your help and thoughts and prayers.

28 January 2015 - 2:41 AM

I just realized I hadn't updated the blog since she got her "pain pump."

We are still excited about the prospects with this new device, but the first day was not as...comfortable as we would have hoped. I might be a little slow when it comes to medical stuff, because I really thought she would have been almost pain free as soon as they got the pump in, boy was I wrong.

Yesterday might have been her most miserable day since we got to the hospital. We could not get her out of pain.  The general pain management plan since we have been here is to find a pain medication that is long acting and consistent to handle the on-going pain, and then to supplement that with "break-through" medications for the times the pain gets worse.  We did this primarily with the fentanyl patch (long-acting) and oxycodone (break-through).  It was relatively effective and Alisa found some comfort, the challenge was managing those medications while at home (she was basically taking the break-through meds every 3 hours)

The beauty of the pain pump is that it handles both the long-acting pain control as well as the breakthrough pain.  There is a little reservoir of medication in the device and some gears that rotate once in 24 hours constantly releasing a determined amount of medication.  In addition there is a little remote control device that Alisa can press a button and it will indicate to the pump to release additional medication.  This is regulated so that she can only press it once per hour.  The idea is that you would only press it occasionally when the pain was at its worst.

Well with that little bit of background here is how our day went.  The night after the surgery seemed ok.  At about 8:00 in the morning she started to be in pain, we pushed the button, still in pain, we asked for some additional medication (oxycodone and dilaudid), sleepy, loopy, and still in pain (when not asleep).  So the cycle through the day was; pain pump button, oxycodone, dilaudid, over and over.  She was never really out of pain.  The pain doctor (that implanted the device) came in the afternoon and increased the dosage on the pain pump.  Still no relief. 

Then Joan stopped by.  (Have I mentioned she is the best).  She only stayed for a few minutes but before she left she made it clear we needed to have our nurse page the pain doctor and have her increase the dosage again.  So we did.  The nurse came back and told us that the pain doctor would be down a little later (it was about 2:00 when all this happened, and the pain doctor came around 5:00 or 6:00).  The nurse also asked why we were using the pain pump only every 90 minutes instead of every 60 minutes (is anyone else asking themselves how they knew this???) The remote control for the pain pump is connected to the hospital wireless and can be monitored remotely.  That's cool.

So...(is anyone bored yet)...the pain doctor came.  I explained that we weren't pushing the button every 60 minutes because she would make it 30 minutes and be in so much pain we would get some other medication and she would be fine for a while, and when it was bad, we push the button again, about 90 minutes from the time before.  She explained that the best way to calculate how much to adjust the dosage is to just push the button every 60 minutes, even if you have to use other meds to control some of the pain.  This was music to my ears.  I feel pretty helpless around here most of the time, but pushing a button every hour...piece of cake.  So I started pushing the button every hour. 

So I set my alarm, and we are off...until 2:00 this morning.  The nurse came in to check vitals, and Alisa's oxygen saturation was 70%.  I don't really know how serious this is, but alarms go off like crazy anytime the oxygen saturation is below 90%.  Alisa had been off oxygen monitoring most of the day and had been fine (that's why there were no alarms, she had been off them all day), well the nurse told me we better stop being so reliable with the button because she was nervous it was causing this oxygen problem.  She told me to wait 2 hours unless Alisa wakes up in pain.  I think everything is pretty much under control now, they are monitoring her oxygen again and she is doing fine.  I have backed down to 90 minutes for the button.

The positive news.  She has not needed an additional dose of oxycodone or dilaudid since we started the reliable-button-pushing activity.  I was nervous maybe this pump wasn't as great as I had hoped, but this recent success and a comment from a nurse keep me hopeful.  He asked if they were doing a good job controlling Alisa's pain.  We admitted that not really, but that it might have to do with this new pain pump she received.  He was almost relieved and said "Those pumps are great, but they do take a couple of days to get adjusted just right, they will get it figured out."  One moment he was concerned they couldn't control the pain, the next he was confident they would.  It was comforting.

 Here are a few pictures from Alisa's birthday party.  I am sure I didn't pick the best ones, photography is not my strong point. (I almost forgot captions)

 Gift box from the boys.  Even in her "not perfect" mental state, she immediately recognized the hand of her friend Steph in "helping" the boys with their gift.  Unfortunately they might have inherited their dads talent for gift giving.  This of course turned out great, thanks to Steph.

 Smiling faces.  Genuine?  Not sure.  It is hard for those boys to see their mom in the hospital.  But they are tough, and were happy to see her.

Perfect

You are not really supposed to have so many visitors.  it was totally worth the risk.  I have to point out the big birthday banner in the background.  My brother's daughters made that for Alisa.  When Alisa saw it she said "I love it, I don't think I have ever had a real banner for my birthday." It was the perfect decoration.

 

26 January 2015 - 9:46 PM

I haven't seen or talked to Alisa yet, but the doctor that performed the procedure came out and said everything went really well.

We will be seeing the doctor each day for the next few days so they can tweak her medication until it gets to the right dose.

We are hopeful she will be feeling better soon.

One of the benefits of this device is that the side effects of the pain medications should be reduced significantly.  That will be awesome!

26 January 2015 - 2:49 PM

Yesterday when I realized we would never really know when we were going home, until the day they tell us, I decided I would try and spend the afternoons at work.  I can't really get anything done at the hospital, even though I could do my work remotely.

So I left at 12:45 to go to work. At 1:45 I got a call from Alisa to come back.  Nothing serious, but not exactly a productive 30 minutes at the office.

Here is the reason I got called back in.

The pain team came in and talked about other options for controlling pain.  Alisa is resistant to do anything that seems palliative, so she was not super excited about this idea, but we decided it would be the best.

The new plan for pain is to install a pain pump inside Alisa's body (http://professional.medtronic.com/pt/neuro/idd/edu/index.htm#.VMa57mTF_xI)

It is a little bit like a permanent epidural, but it shouldn't mess with the muscle function.  It will have a base rate and she can also give more as needed.  It is controlled remotely (that's cool).  The surgery to install the pump takes about an hour and is scheduled for early this evening.  She will need to be observed for at least 24 hours post op.  The doctors all think this is the way to go (including Joan, who we trust with our lives).  Alisa has been very clear headed today and feels like this will help her continue to fight.

Looks like a couple of more days in the hospital, totally worth it.

24 January 2015 - 11:59 PM

I don't know why I get my hopes up.  They did not let us go home today and when the doctors came in I didn't have the guts to ask.  They don't really know, so it isn't a fair question anyway.  They are not going to send her home until they think she can be comfortable at home.  Basically they need to get her nausea and pain under control.  The only hint hey gave was when the doctor said, "Let's give you some more fluids, make some changes to the pain meds, and see how you are doing IN A COUPLE OF DAYS"

After talking to the doctors they decided to try adding oxycontin to help control the pain, and they had Interventional Radiology do another nerve block in her back (she just came back from that at 9:30).  I am really hoping that helps.

One of the things I have been concerned about this last week is that Alisa seems to be...not herself.  I don't know quite how to explain it.  It is like when you wake up from a vivid dream and for a few moments you are trying to remember what is real and what isn't, or just as you are falling asleep you are dreaming of soccer, you kick the ball and you jerk awake because you actually tried to kick in bed.  She seems to be in this state most of the day.  It is not very obvious to the nurses, because when she talks to them it isn't way out in left field, just abnormal for Alisa.  I have spent plenty of nights (and days) in the hospital with her and this is very different.  Even when she was on IL2 (which is notorious for making you...crazy) she was not this loopy.

The challenge is that for me, this is important to get under control, but it does not really concern the doctors (let me be clear, I think they are probably right) they believe it is just the amount of medications she is on, and it will pass once we figure out the right combination of medications.

I know I was joking about it last week, but it stopped being funny.  I just want Alisa back.  Here are some examples of the things she says and does that may seem normal, but are not for Alisa.  There are funnier things, but because they have lost their humor, I can't recall her best ones.

• She gets excited about basketball plays -   Alisa will watch basketball, if there is nothing else to do.  We have been to some games, she has watched a few on TV with me.  But in all the years she has never commented with excitement, "Can they do that, that was a foul." "Whoa, nice dunk!" "ohh, why do they keep missing those?" (4-5 three pointers right in a row.)
• She asks the nurses personal questions - She is normally very personable with the nurses, but in a very tactful, socially acceptable fashion.
• Alisa: How is your daughter?
• Nurse (surprised): My daughter, I do have a daughter...she is...fine.  (Alisa has never met this nurse, and I am sure the daughter thing was just a lucky guess)
• Alisa: Good, good
• She doesn't get mad at me for asking questions - Alisa has pretty much handled her own patient care anytime we have been in the hospital.  She is constantly asking the doctors and nurses what medications they are giving her, refusing the ones she doesn't want, asking for different ones that serve the same purpose, etc.  I learned a while ago that my job is to observe and support whatever she decides.  I have asked questions in the past and I get a look that I should hold my tongue.  It isn't that she doesn't want me to know, she just prefers that I ask her (after the doctors and nurses have left), so she can explain it in terms that I will understand.  It took me a while (almost a week) to realize that she was not controlling her care like she has in the past.  Today I started asking some questions (I am sure they were not ideal), she didn't even question me.  Good?  Nope, I prefer to sit back and observe.

Even as I write this I can see Alisa reading this and critiquing my grammar, punctuation, and entertainment value.  Well she can't spell, and I can't write (but I can spell). I think she married me for my good looks not my ability to write, lucky for me.

Right now my hope is that I can talk to Alisa again clear of mind.  I hate seeing her in pain, but I also hate that she is not able to laugh with me,  tell me how to take care of the boys, remind me not to bother the nurses with my questions, and talk about the future.  I hope I don't have to choose one over the other.

Thanks for all your prayers.  It really is the best thing you can do.

P.S.  I don't know who was praying for us tonight at 7:30, but thanks.  At that time is  a nurse shift change, our day nurse (Karen) was briefing our night nurse (Jen) on Alisa's situation.  I remembered about the nerve block we had discussed with the doctors in the morning (10:00ish) and asked Karen if she had heard anything.  She said there were no orders in the system and had not heard anything from IR (interventional radiology), she also thought that the IR doctors did not stay at the hospital on the weekends and typically needed to be paged for emergency situations.  She left and we thought we would need to re-address it with the doctors in the morning, and possibly wait till Monday.  five minutes later Karen came back in and said they just received a call from IR and they are on their way to get Alisa for the nerve block.  Prayers answered.  Thanks!