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!

23 January 2015 - 11:00 AM

We will not be going home today.

They have been trying to balance Alisa's fluids all week.  They don't want to give her too much (she is retaining all of it) but they have to give her enough to keep her kidney's functioning properly. 

Her blood work came back this morning showing her kidney function was down a bit, so they are giving her fluids today and don't feel good sending her home yet.

She sleeps a lot.  Sorry for the short/lame update.

21 January 2015 - 10:07 PM

They took a 2.1 liters of fluid out of Alisa's abdomen today.  We hoped it would provide more pain relief.  It has seemed to help with the pressure around her middle, but she still has pain, especially in her back.

We will investigate tomorrow the cause of the pain.  We think the soonest we could leave would be the weekend.

Alisa really wishes she could write.  She is pretty groggy from her medications.

She wishes she felt good enough to blog.  

-Josh (although Alisa basically told me everything to say, she tried dictating a good blog after reading my previous posts, but she keeps dozing off, so this is what we came up with)

21 January 2015 - 10:33 AM

here is what happened in the last 24 hours.

1. They moved us from the 5th (ICU) floor to the 4th (not ICU??) floor.  She does not have to be monitored constantly since stopping the IL2 portion of BioChemotherapy
1. Downgrade - the room is a bit of a downgrade.  
1. It is smaller (less room for my mess).
2. the view is not as pretty (lower floor), although not a bad view.  kind of like the difference between the ocean view of a hotel in Cancun versus the garden view.
2. Upgrade - you could also consider it an upgrade
1. the room is private.  there is a door and it is very quiet.  The other room had big glass doors that they never shut so you could hear everyone's alarms going off.
2. Because we are not in the ICU anymore the nurses only come every 4 hours to check vital signs.  Alisa can get a little more rest at night.
2. Alisa got a thoracentesis to remove some fluid from her lungs.  I think around her lungs, not necessarily in her lungs.
1. She was transported to the U of U hospital for the procedure.  I only mention this because I learned there are underground tunnels connecting the two hospitals, and on her return trip back she had some fun with her "rookie" transporter who kept taking wrong turns and getting stuck in the elevator.  We probably should give him a little bit of a break, he has to move a huge hospital bed plus Alisa's tree of fluids, drugs, etc.
2. They removed 1 liter of fluid from just one spot near her lungs.  Seems like a lot.  They will do a...similar treatment on her stomach today.  (I should mention that by stomach I mean her belly area.  She gives me a disappointed look when I say stomach because it isn't technically the stomach.  I imagine the nurses reading this are rolling their eyes at my ignorance, go ahead, I am used to it.  I am hoping the rest of you understand what I am trying to say)

We have had a couple visits from the nurse practitioner today, but I haven't had a chance to ask when we might go home.  Not today.

20 January 2015 - 9:25 AM

I have a feeling Alisa will be "improving" some of my blog posts when she is feeling better.

Her pain has gotten a bit worse since Saturday.  We can't tell if it is because of the tumor or because of the water retention.  the treatment she is receiving makes her retain water.  She is very uncomfortable.  I will let her tell you how much weight she has gained...

They are going to try and drain some of the fluids today, hopefully this morning, to try and relieve some of the pressure.

Tonight she will receive her last dose of the chemotherapy.  Tomorrow we will hopefully start preparing to go home.  I think they will need to make sure we can control her pain without using IV medications.  I am not sure we will be going home tomorrow, but we will be closer.

- Josh

Birthday Girl

This is Sonja again. I don't know that I can do this story justice, but it is one that I really want those who love Alisa to know about, to share a bit of joy she had today on her birthday.

When Alisa's cancer was in her brain a few years ago, Alisa posed for a portrait for James Christensen, her favorite artist. He knew of her story through his daughter-in-law, Jennie, one of Alisa's dearest friends.

Since then, she has waited with anticipation to see the painting. Jennie had seen glimpses of the progress, but Alisa had no idea what it would look like.

This week, James finished the painting and Jennie was able to present it to her for her birthday. Jenny showed her the unglazed painting on Wednesday at the hospital, and then today, for her birthday, Alisa got the framed painting to keep. 

She was completely overwhelmed by the gift. Since Wednesday, Jennie's visit with the painting is really the only event in the hospital she remembers consistently. When we come to visit, she asks if we have seen it. She just loves and it you can see why.

Today for her birthday, we broke the visiting rules and marched into the ICU with all 8 of her siblings , our parents, and Alisa's three boys. We had balloons, flowers, gifts, and her nurses had brought her a cake. We told her we were coming, but the big surprise was the painting. She was overcome with emotion, really. As Josh read the artist's description, we teared up.

"The square represents Earth, it is mortality with edges, it has boundaries. (A circle is eternity).

She is partially in the square an partially out.  Her body inside the square represents mortality, outside the square represents eternity.

The jewels represent her boys birthstones."

I can't totally put myself in her place, but I know my sister well enough to understand just how much this means to her. First of all, that someone would spend the time to create such a beautiful thing for her is just incredible. And that the painting so beautifully portrays her, with her long hair and free from the lymphedema and scars of cancer. Also, the significance of the jewels representing her greatest treasure, her children. Alisa has an incredible eye for beauty and I think this painting has captured her beauty in a way that goes beyond just a physical likeness, there is something of her beautiful spirit as well.

So thank you, Mr. Christensen, for a making Alisa's day. This is a work of art that will be treasured by Alisa and all of us who love her.

-Sonja

The big reveal.  My hands!  My youth!  My hair!  Painted by a maser.  I'll have to write more of what this means to me, but check out some of his work here

18 January 2015 - 9:30 AM

Sorry we haven't updated you for a while.  Alisa was actually feeling up to posting herself last night and then fell asleep before she had a chance to start.

She has been feeling much better.  We think it is because of the nerve blocks they gave her, but we are thankful they do work.

She goes in and out of awareness throughout the day.  It is not as bad as when she was on the ketamine, but she still has a hard time remembering dates, and some other things. It is most likely just because of all the medications she is taking.

There is not much more to report.  Assuming they can keep her comfortable (out of pain) each of the next 3-4 days should be pretty similar.  Sleeping on and off during the day, chemo at night.

I will keep you updated on her progress.  Thanks for all your concern.

PS - Happy Birthday Alisa!!!  

-Josh

16 January 2015 - 10:10 PM

Alisa just started bio-chemotherapy.  She will receive her last dose Tuesday night. 

They took her off the Ketamine and gave her a Fentanyl patch that is slow acting pain relief.  It seems to be working better than the Ketamine.  She doesn't use her PCA as often and she is less crazy (still a little crazy, something about the girl behind me taking down all the BYU decorations came up a couple of times)

Really happy her pain is controlled better, happy her treatment is started. 

Thanks for all the kinds words, thoughts, and prayers.

15 January 2015 - 7:30 PM

This is Sonja.  I had the privilege of visiting Josh and Alisa tonight.  And I even happened to be here when the doctor came in.  Alisa asked me to write an update.

This morning, she went to interventional radiology to do a celiac block.  The hope was to control the pain in the front of her--and it worked pretty well.

The doctors decided not to try the embolization because of risk of infection.  If she gets an infection then she wouldn't be able to do biochemotherapy.  The other issue is that it can be very painful as the tumor dies, and she is already in so much pain.

Dr. Grossman decided the best shot to shrink the tumor is to try biochemotherapy.  They will start that tomorrow.  She will be in the hospital for at least the next five days.

Alisa's pain is controlled to an extent, but she is still fairly miserable.  In her words, "I feel so miserable, miserable in every oriface."  She isn't able to eat or drink and is a little loopy.  She isn't able to sleep and is just hoping to sleep from 11pm-6am.  "Is that to much to ask for?"

A doctor came in and Alisa asked her the hard question, "Is this the end for me?"  The doctor said that when pain is so consuming it can feel that way.  She said there was some hope that she could get a great response from the biochemo therapy, that a few people do.  But if she gets a response at all, that would be really good.  There is about a 50% response rate to biochemo, but she needs a good response.  If she gets a good response, it should reduce some of the symptoms she's dealing with like the pain and the fluids in her abdomen.   If she gets a response, they may be able to try PD1 or possibly even surgery.

But on the other hand, if nothing works, then it looks bad.  Alisa started to cry a little and explained," The problem is I have always been so hopeful.  And I'm not really good at losing hope."  And then Alisa pressed on with, "How long will I live?"  The doctor wouldn't give her a straight answer, of course no one knows.  Alisa's vitals all look really good.  If she continues with IV fluids, they can sustain her for a long time.  

She keeps saying the hardest thing for her is how fast this has come on.   She doesn't feel ready to die.  She's not ready to say goodbye.  She has so much she wants to teach her kids.   And really, that hope that has kept her going so long is hard to extinguish.

Thinking about the situation, Alisa said, "This is going to take another miracle."  And so tonight as you pray for Alisa, pray for the biochemotherapy to work.  Pray for Alisa to get a good night's sleep.  Pray for her to be comfortable and to get to eat again.   Pray for her kids and for Josh.

14 January 2015 - 11:00 PM

After some visits from a few doctors, including the "Pain Team", whose job is to help manage cancer pain, they decided to do a few things that have seemed to work.

1. They increased her PCA dose from .2mg of dilaudid to .5mg.  She can receive this dose whenever she pushes the button (subject to constraints mentioned in the previous post).  This is only step one because she has been on some pretty heavy narcotics for the last few days with no relief
2. They put her on a continuous drip of Ketamine.  This seemed to help a little better.  One of the nurses said "this drug has a great street value."  We can understand why.  Alisa is having all sorts of vivid dreams and even started singing happy birthday to Sam when she called him (his birthday was yesterday.)  She was a little upset with me that I didn't stop her immediately and tell her it was yesterday (apparently Sam was a little confused), but I couldn't, she seemed to happy.  After 5 days of being miserable and in pain, it was refreshing to see her happy again (if a bit delusional.)  I decided delusional is better than constant un-yielding pain, as long as it isn't permanent.
3. They gave her some nerve blocking injections.  I am sure there is an official name for this, but I must have missed it.  Basically they injected lidocaine into the nerves in her back (between her ribs) and it magically stopped the back pain (the worst of the pain she has been experiencing).  the doctor told her he could do that every 2-3 days.  She came back from this procedure feeling better than I have seen her since last week.

The last couple of hours have been much better than the previous couple of days and I even think Alisa will get a good nights rest.  The downside is that we are really just masking her pain, we haven't done anything yet to try and address the cause (the tumor).

We have a plan to try 2 things.

1. Embolization - I think I got this term right.  Basically they thread some wires and other tools up the femoral artery until they get INSIDE the tumor.  They find the blood supply to the tumor and shut it down.  This effectively kills the tumor.  They were going to try this tonight but it requires that Alisa lay still for 4 hours after the procedure, and the pain she was experiencing was not going to allow that.
2. PD-1 - We are still hoping she can get a dose of PD-1, but they can't do it while she is in the hospital, so she will have to be discharged first.  If her pain is under control tomorrow, we could still get the PD-1 tomorrow afternoon.

The goal today was to get her pain under control.  Success! 

Tomorrow we will come up with a new plan.

-Josh

14 January 2015 - 12:10 PM

After all our efforts last night we couldn't control the pain at home.  Alisa was admitted to Huntsman this morning around 11:00.

They are trying to get her comfortable, then we will decide what to do. They did another CT scan (not sure how different it will be from yesterday (not sure I want to know)

I think they will try and do the radio-frequency ablation today while she is here.

I am not sure what will happen, but I can't imagine going home today.  I don't think they (nurses, doctors, etc) know either.  Alisa asked one of our nurses how often people get admitted because of pain.  He didn't say never, but I don't think it happens very often.

They have given Alisa a PCA, not sure what it stands for, but it allows her to push a button and get a dose of pain medication (strings attached, no overdosing, really only gives medication every 10 minutes) but still, it seems to be working, kind of (she just woke up telling me it still hurts)

On a positive note, we are back in the ICU at Huntsman where we stayed for 6 weeks 3 years ago for IL2 and we have lots of the same nurses.  Alisa loves these nurses.  They gave her a warm welcome and a hug as we came in.


I will try and keep you all updated.  Thanks for the thoughts, prayers, offers to help.  the show of love and support is overwhelming.

- Josh

14 January 2015 - 12:15 AM

The pain has continued to get worse, I have no appetite, and anything I try to eat comes right back up.  Things have done downhill pretty quickly.  I have not been out of bed in days.

This morning I called the Dr to see where I should check myself in.  We ran up to Huntsman and did another CT scan.  In 1 week it grew by 15%.  Part of the tumor is bleeding and ascites has developed.
I was hoping the surgeons could rip it out before I did it myself, but the bleeding makes them more nervous to perform the surgery.  So we have doubled the pain killers and will stick to the PD1/radio-frequency ablation plan.

I have been caught completely off guard.  I hope I can talk about it tomorrow.  I have been talking to my kids about today and that is all the energy I had.

So today we scheduled an infusion on PD-1 for the 15th (the earliest they could get me in).  I am getting appointments with a surgeon and an interventional radiologist.  The surgeons in the tumor board thought that because of the risks of the surgery if there is anything I can do to shrink it, that would be preferred.  The risks seem to be the same as they were before I started BRAF when I talked to a few of them.  I am worried if it continues to grow that the surgery would get harder.  They thought it would be the same surgery in the case that it keeps growing and we don't get a response from the PD-1.

One idea they had is to try and de-bulk the tumor with radio-frequency ablation.  We are not sure I'm a candidate for that, but we could possibly do that while I'm on PD-1, or we can do the surgery after we start the PD-1 if we need to.  I will talk to the two doctors and we can see what can be done.

Today has been a painful day.  I am going to start taking my pain killers around the clock so I don't let the pain get out of control like it did this morning.  Things get pretty hopeless when your insides are screaming.  I've had pain before, but it's always been easily controlled.   This seems to be something different.  It is terrifying to take Percocet and not be able to tell a difference in the pain.  We have a prescription for a long acting pain killer, and it really might come to that.

What keeps me going today is a quote from my friend Cory's Facebook update.  January 1st he completed a 72 hour race.  His goal was to get to 200 miles (can you even imagine?).  He checked into Facebook at one point, "Currently at mile 174.  My leg muscles are in knots unlike anything I've experienced before (duh) and they don't want to unkink.  But it's down the one last marathon."  

Down to one last marathon.

I'm ready to finish this fight.

results

Just as I suspected, the tumor is growing.  I was going to take a picture or what I'm talking about, but I couldn't even look at it on the screen.  It's like twice the size as last time, and just a lot uglier.

The doctor is going to take the case to the tumor board tomorrow.  We are hoping it can be surgically resected.  That would be awesome.  If not we can try and shrink it with PD-1 or biochemotherapy.  I hope a decision will be made quickly, as when these things start taking off (my armpit tumor) they seem to go crazy.

The doctor was surprised that the BRAF wasn't effective, usually at 2 months there is at least stable disease, but usually shrinkage.  I guess you never know.

I'll update tomorrow.

be careful what you wish for

I had my scans done yesterday.  I definitely have a gut feeling what they are going to say when we get the results tomorrow.  Because when the CT machine told me to take breathe and hold it in, my right side hurt.  When I laid on the MRI table I had to adjust my stomach just so so that I was not uncomfortable.  

The tumor feels like it's growing (it's been going on for weeks).  Josh tries to find different explanations, hoping maybe the tumor is ripping away from my organs.  This is the same pain I felt twice now.  Right before I started PD-1 in Florida in 2013, and right before I started the BRAF drugs a couple of months ago.  

If indeed the BRAF drugs are loosing effectiveness and the tumor is still too involved to resect it, I think we would do PD-1 again.  It is now FDA approved so I can get it in Utah.  It was approved with the stipulation that you have to fail IPI and the BRAF drugs (which is why I am on the BRAF drugs).  

I have a tradition to read my journal entries from the past year on New Year's Day before I make resolutions.  2014 my only resolution was to survive (I was very sick a year ago).  I am happy that we made it through the year, for sure.  I told Josh that I would just stick to that same resolution, and he told me to 'set realistic goals'.  And we kind of laughed, but we are pretty terrified.

Last year something happened that I feel very grateful for.  When I was diagnosed at stage IV there was cancer in my liver, bones, and tumors scattered throughout the body.  After doing all my research I prayed that I would be able to try everything (at the time the major options were IL-2, IPI, TIL transfer, and BRAF).  I never wanted to wonder if something would have worked if only we had the chance at it.  In 2014 this prayer was answered.  

We will of course keep trying new things (and old).  When discussing with the boys what will likely happen next (PD-1), Luke asked us what would happen if that doesn't work.  I explained that at some point they kind of send you home to die (I wish I could say that I said that a little gentler, but I was kind of put on the spot).  He quickly decided, "Well, that's a bad doctor."  So there will be no giving up over here.  Josh's work actually switched insurance companies this year and our insurance will now cover some of the major cancer centers in the U.S.  There might be more trials and more travel in my future.  

Who knows?

I will let you know what happens tomorrow.  Thanks for all the kind acts and thoughts and prayers on our behalf.  We are totally going to be okay.  Right?