Thursday, February 26, 2015

It's Alisa writing today.  The last 2 months really have been a blur for me.  Writing or keeping any attention at all on something for an extended period of time has been difficult.  I'm glad Josh can help in catching everyone up on how we've been.

Yesterday we got scan results to see if the biochemotherapy has changed the cancer.  The scans showed not much change.  Meaning it has definitely slowed the spread.  They talk about cancer in my gut and in the fluids that are free flowing in the gut.  Although I still have some ascites, it is much improved.

So we would normally continue on the path that is helping, but this time we just can't.  My body had a pretty rough little go, and who knows what another round of biochemo would do to it.  We have to move on to the next treatment.

We will start PD-1 tomorrow morning.  This is the drug I did in Florida, the one I tried so hard to get in Portland, the one that we did BRAF for so we would qualify for it.  This is the drug I have so much of my heart set on working.

But the doctor said this is a slim chance because of the progression of my disease.  The doctor said best case scenario it controls or eliminates the disease (he thought maybe 5% chance of this), and worst case scenario it does nothing to improve the disease.  He said if this is the case we would be talking months left to live.


Today Josh and I went to look at plots in our cemetarty.  We interviewed some people to help me out during the day.  I am trying to feel hopeful, but feel much more at peace when I'm doing something about my problem here.  

We had to tell the kids the news, and the prognosis too.  I can only say the thing that makes it even possible to bear is that I know the world is kind and good.  I don't know if I could be as sure of this if I hadn't been through this tragedy we call cancer.  Everyone has been so helpful and loving and sincere to our family.  I know my kids can't help but feel it too.  We have had so many kind words and deeds and prayers said on our behalf.  These all soften the blows for us.  I have enough faith in the world at large to believe they will have a safe place to fall if the worst does happen.

Thank you for that.  Hope to get more regular posts in, now that I'm recovering.  

Monday, February 23, 2015

23 Feb 2015 - 7:50 AM

I think I forgot to mention that on Friday they decided to pull out the new feeding tube (placed on Tuesday) because it was coiled up in the stomach (it is supposed to go passed the stomach to the intestine). 

They continue to medicate her for nausea and Alisa is throwing up less.  I am not sure if it is less because she has nothing to throw up, or if she is getting better.  She has only had a couple of bites of toast the last couple days, but has been able to keep it down.  She ends up dry heaving 3-4 times each day.

They have not replaced the feeding tube and decided they would place a new feeding tube, but one that does not go through her nose.  I think it is called a J-tube, and is placed directly into the intestine (or stomach) through your belly.  They think that the nausea could be caused by some of the tumors in her intestine.  I am not sure how I missed this news (selective memory?) but I don't remember there being tumors in the intestine, but Alisa assures me they mentioned it. Awesome...

They are going to place the J-tube today and try and place it below the tumors in/near the intestine, that way she can get some nutrition.

Alisa doesn't remember this, but when they first talked to us about giving her the pain pump, she was kind of against it.  She said it felt like a permanent solution to a temporary problem (my words not hers).  I was totally for it, anything to help reduce the pain.  Now the roles are reversed.  I don't love the idea of the J-tube, it seems...too close to despair.  Alisa is for it, anything to reduce the vomiting and discomfort.  I am sure it will be a good thing, and nothing that can't be removed when she is all better...

Saturday, February 21, 2015

Not Home - Again

I was gently reminded yesterday (by my brother) that I have not updated the blog recently.  I realize it has been a week since the last update.  Really sorry about that.

So things are not going so great.  I would not say they are worse, just miserable.

Alisa has basically been throwing up every time she stands up.  This happened that last round of chemo and it took 3-4 days for her stomach to settle down and get back to normal.  I figured we could get through those 4 days at home with nausea medications.  Here is how it went down.

Saturday Feb 14th
   She was sick all day and so we decided to give her some "food" and water through the feeding tube.  It was clogged.

Sunday Feb 15th
   Still very sick.  Alisa is now concerned she is not getting enough water and is getting dehydrated.  Spent the day trying to unclog the feeding tube, even called the Home Health nurse to help.  No luck.  I convinced Alisa this was not an emergency situation and we didn't need to go to the emergency room to get fluids and get the feeding tube replaced.  We could just go to Huntsman Acute Care Clinic Monday morning and they would take care of it.

Monday Feb 16th - Presidents Day
   Huntsman Acute Care Clinic is closed for the holiday.  Dang.  During all this time I am giving her round the clock nausea medications and hoping things will start to get better.  I keep telling Alisa that this isn't the first time she has had uncontrollable nausea, she will start feeling better soon.  She believes me (or at least pretends to).  She gives in and talks to the on-call Doctor in the afternoon.  She suggests waiting until Tuesday to come in to the Acute Care Clinic.

Tuesday Feb 17th
   9:30 AM - We arrive at the acute care clinic and they give her fluids.  We spend the entire day here.  They remove the old feeding tube and place a new one.  They give her IV nausea medications.  They give us the option to stay in the hospital or go home and try and manage the nausea at home.  I vote for going home and Alisa agrees.  I think she does it to be nice.  She doesn't like the hospital but she really thinks there is something more going wrong.  I tell her is has now been 4 days since chemo was over and that things will start getting better.  I commit to doing better at making sure she is getting her nausea medications on time (one every 8 hours, another every 6 hours).  I think with the new feeding tube I should be able to keep her nourished and hydrated.

Wednesday Feb 18th - Thursday Feb 19th
  I basically force Alisa's medications for the next 2 days.  She is getting 12 hours of feeding tube food and water each day.  I sneak some medications she hates through the feeding tube when she is sleeping.  we wake up in the middle of the night to give her the medications.  She throws up less during the 2 days.  but only because she is sleeping, all the time.  Thursday night she tells me not to wake her up for medications.

Friday Feb 20th
  Without the constant medications Alisa is much more alert and even helps get the kids ready for school (amidst a couple of bouts of vomiting).  I decide to go to work for half a day.  She decides to see how she does during the morning and call the doctors office around noon.  It has now been a week since chemo therapy and nothing is helping her nausea.  I have no more ideas.  The Doctor tells us to go to the Acute Care Clinic at 3:30.  I really hate the situation at this point.  I am not sure what else they can do, but I certainly am out of options.  We show up and they start fluids and ask if Alisa wants to be admitted so they can try and figure out what is going on.  The idea is that if she is in the hospital they can make quicker adjustments to her treatment to find the right combination to make her feel better..  I think they are right, certainly faster than giving us one thing to try, sending us home, and coming back 2 days later with no results.

Saturday Feb 21st
   Alisa slept pretty well last night, but the nausea is not really getting better.  They are giving her IV meds for the most part.  One of the hardest things about this (besides Alisa feeling miserable) is trying to communicate the success (or lack of success) of the current treatment.  For example, if Alisa only throws up once through the night, is that better?  If she threw up 6 times yesterday and only throws up 4 today, is that better?  The problem is that if she is constantly medicated (sleeping) she can go quite a while without vomiting.  She kept down 2 bites of apple sauce last night.  We want to think that is progress, but I am not sure.  She has had a popsicle every day this week, and has thrown it up each time, but did she throw up the whole thing or just 90% of it (keeping down the first 2 bites maybe)?  So you see the problem. This is hard for me, because I like to think I know how to take care of Alisa.  I wanted us to go home, because I thought I could handle things just as well.  I watch them give her the same medications I have been giving her, and nothing helps.  Normally they would give steroids at this stage to fix the nausea, but they want to avoid steroids as long as possible because they can negate the affect of the IL2 she has been receiving.  I told Alisa last night I would keep my mouth shut because I don't really know what to do (that did not work out perfectly this morning, but I am tempering myself).

So now you are up to date.  Sorry again about the lack of info this week.  For all the thoughts and prayers, you really deserve more than an update once per week.  I will do better.


Saturday, February 14, 2015

Home Again

We made it home last night. 

Alisa has been pretty sick since Thursday night (mostly vomiting).  I think it is primarily related to the chemo, but the doctors are concerned about her being dehydrated if she doesn't get something down.

We kind of talked them in to letting us go home and work on the nausea there.  It hasn't been much better, but at least we are home, kind of. 

Technically we are at Huntsman again this morning, but only for a couple of hours.  She needed to come up for a shot (to help boost her white blood cells) and some fluids (to prevent dehydration).

We should be home for the next couple of weeks.

- Josh

Wednesday, February 11, 2015

2 down, 3 to go

Alisa has had 2 doses of chemotherapy and should get 3 more over the next 3 days.  Joan is really happy about how things are going.  Alisa is not retaining nearly as much fluid as last time.  Joan decided to give her less IV fluids and give Alisa most of her fluids through the feeding tube.  This seems to have helped a lot.  After 2 doses she has only gained like 3 pounds (I think she was up 15 at this point last time).

She still gets fevers occasionally, and sometimes she just feels sick.  Her pain has been pretty much under control, she is only pushing her pain button a couple of times each day.

In our optimism, Joan and I discussed going home Friday night if everything continues to go smoothly. Lets hope.

- Josh

Monday, February 9, 2015

BioChemo Cycle #2

So we made it to the hospital this morning and everything checked out ok for Alisa to start another cycle of BioChemo.  We will be here through Friday (at least).

Alisa doesn't remember much of the last time we were here.  In fact, she doesn't remember much of January.

The inflammation in her lung was some random virus (or something) that Dr. Grossman didn't think was very serious, but needs to be treated with some very specific antibiotics, which she started today.

Dr. Grossman basically started today by telling us that there are some risks with this round of chemo.  Starting chemotherapy with an infection, not recommended.  Starting chemo while not in the best of health, not ideal.  But he also said, the bigger risk is the tumor, and we need to attack it with everything we have.  So here we go.

 - Josh

Friday, February 6, 2015

Home Sweet Home

We came home last night.

I know I should have updated everyone since my last post.  Sorry.

They did the bronchoscopy yesterday but won't have results until Monday.

We will start chemotherapy again Monday, depending on the results of the bronchoscopy.  I think if there is an infection, they will need to treat it and get it under control before they start chemo.

Alisa had a better night last night than she has in a couple weeks.  She is still in pain, and gets tired very quickly.  She did have enough energy this morning to get up and make the kids breakfast and see them off to school.  It was nice to have a glimpse of our old normal life.

I am sure she will try and post something this weekend.

 - Josh

ps - thought I had published this already this morning.

Wednesday, February 4, 2015

Home - Almost

We were packed up and ready to go at 6:30.  The PA that has been helping us came in at 4:30 and told us we should be able to go at 6:30 when Alisa's blood transfusion was finished.

At 6:25 he showed up, obviously distressed.  He had been on the phone for 2 hours talking to the pulmonary doctors and the radiologists trying to determine how concerned they are about what they found on the chest CT scan.

They found a little bit of inflammation in her upper right lobe.  They don't know why after 5 days of strong antibiotics she would still have an infection.  It possibly explains why she is still having fevers. They are going to keep her here overnight and possibly do a bronchoscopy in the morning to see what is going on.

Maybe tomorrow.

- Josh

Tuesday, February 3, 2015

3 February 2015- 11:38 PM

We learned today that the reason they have not put the drain in is because they want Alisa to have 24 hours without a fever.  She has had one every night.

They decided to do another CT scan to see if they could identify a reason for the fevers.  The blood cultures have come back negative for the last 3 days (meaning there is no bacteria in the blood causing the fevers) and no outward sign of an infection.  They think the fevers might be related to the tumor, which would allow them to put in the drain.

We thought maybe they would do it tomorrow.

I left the hospital around 4:00 to go down for Sam and Luke's parent teacher conferences.  I made it about 5 minutes when I got a call from Alisa saying they were in her room ready to take her to get the drain placed.  I turned around and came back.

I waited in the room for about 30 minutes when the nurse came in and said to go downstairs.  They want to show me how the drain works.  To my surprise they hadn't even started.  They walked me into the room and asked me to sit down, just in case I fainted.  Then they started the procedure.  The doctor, the nurse just called him Chak (sounded like chalk, but he was from India, or that part of the world, so I picked my own spelling) started sticking needles and drains in her back, and they let me watch.  It was fascinating.  He talked about how he does training for other doctors on how to do this procedure, because he does it with just local anesthesia while most other doctors do it under general anesthesia.  I can see why they get nervous, he kind of manhandled Alisa's back, but she seemed to do just fine (she is exceptionally tough).  I didn't pass out.

We drained 1 liter of fluid, and he told us to drain 1 liter every day until we don't get 1 liter, then every other day.

It hasn't really reduced Alisa's pain, but she is breathing better.

I blame it on my optimism, but I think we might go home tomorrow.  We will see.

- Josh

Monday, February 2, 2015

2 February 2015 - 7:37 PM

It looks like tomorrow they will place the drain.

Alisa continues to have escalating pain.

Her doctor said he is worried.  He is worried we haven't been able to stop the fevers, and that the pain getting worse is the tumor getting bigger.

We still have a couple of tricks to try, but today was a discouraging day.

We will try and let you know when things come up.  It is really hard for Alisa to respond to all the emails and texts, she falls asleep easily during any of these tasks...

We do believe there will be brighter days.  We are looking forward to them.

- Josh

Sunday, February 1, 2015

Super Bowl Sunday

Alisa slept well last night.  I think I was hoping for a relatively easy day. 

Not so., at least not since the afternoon started.

Some good news.

After re-running the blood work they found her INR to be normal and after some additional tests they decided they could also rule out DIC.  They decided they would go through with the thoracentesis after all and that the Doctor would stop by and discuss. Turns out there is more than one option when you have fluid all over your lungs.

They talked about putting a semi-permanent (it can be removed at a later date if no longer needed) catheter in so that we can drain the fluid that accumulates near her lung from home.  They think this is the best option because the fluid came back so quickly.  The doctor that performs this procedure is not in till tomorrow.  They decided to take a sample out to make sure there is no infection (might be causing the fever) in the fluid around the lungs, because if the fluid is infected the semi-permanent drain may not be an option.  They took out 500ml of fluid and "left plenty for the procedure tomorrow, it is much easier to place the catheter if there is more fluid. They thought this might relieve some of her pain a little, but it didn't.

She has been in as much pain this afternoon since we came to the hospital...can't recall the date..mid January?  She has her pain pump, oxycodone and dilaudid and still only finds relief when she is sleeping.

She still has a fever.

Pretty exciting end to the Super Bowl though.  I thought the commercials were a bit disappointing.