Alisa Linton

 

Alisa Johnson Linton, 36, passed away peacefully in her home in Lehi, Utah on Tuesday, May 19, 2015 on the morning of her 15th wedding anniversary to her middle school sweetheart, Joshua Linton.  Her three boys and beloved husband were by her side.  

Alisa was born in Mesa, Arizona on January 18, 1979.  She was the second of nine children born to Paul and Jill Johnson.  She spent much of her enchanted childhood in the country in Paradise, Utah.  Her family later moved to Sandy, Utah.  She was a successful and well-loved student at Jordan High School and later Ricks College where she earned her Associate of Science in Nursing.  After earning her degree, she worked as a Registered Nurse.  On May 19, 2000, Alisa married Joshua James Linton in the Salt Lake Temple.  She finished a Bachelor of Science in Public Health from Brigham Young University.  

 

She accomplished many things in her short lifetime.  She was an excellent student, a dedicated nurse, a talented photographer, a poetic writer and a courageous cancer patient.  But her favorite role was mother.  The same bold determination that characterized all her pursuits also defined her commitment to her boys, James, Sam and Luke.  Of them she said, "I have given three wonderful children life, but I can't shake the feeling that in some strange ways, they have given me mine."

 

Alisa was an artist and everything she touched became beautiful.  She had a gift for photography and many of her friends and family own treasured images that she captured for them.  Alisa loved to travel and experience first hand the beauty of God's creations, but she didn't need to travel to find beauty.  Her idea of the perfect summer evening was to watch her kids and dog playing in the water hole in the park. She loved to decorate, garden, cook and entertain and did it all with ease, style and love. She could also see the good and beautiful in the people she loved as well as those she had just met.  She was compassionate and would draw upon experiences of her own hard times to know just how to help a friend in need.  She was a true disciple of Christ.

 

Cancer opened her eyes and then her inspiring writing opened ours.  On her blog, she reminded us to be grateful, "to share more," to pray, to "appreciate now," and that "love is what makes us happy."  She showed us how to love life unconditionally, to trust, to share your life with someone.  She learned that "the way out is through," that "the world is kind and good," to believe in miracles and that sometimes miracles sing.

 

Alisa is survived by her loving husband; Joshua James Linton, and three sons; James Michael, Samuel Kent, Luke Joshua, her parents; Paul and Jill Johnson, siblings; Sonja (Robert), Jon Paul (Bryanna), Michael (Amy), Matthew (Brittany), AnneMarie (Nathan), Kari (Bryon), Mark (Amanda), Kirsten (Alex), and grandmother; Donna Washburn as well as many adoring in-laws, nephews and nieces, cousins, aunts and uncles.

The family wishes to thank all the people who have reached out in love and support to them throughout Alisa's fight.  They especially wish to thank the many doctors and nurses at the Huntsman Cancer Institute for their dedicated care.  Alisa had a special place in her heart for her nurses.  

 

Funeral services will be held at 11:00am on Friday May 22, 2015 at the Lehi East Stake Center at 851 N 1200 E.  A viewing will be held on Thursday evening from 5:30-8:00pm at the same location as well as from 9:30 to 10:30 Friday morning.

In lieu of flowers, please consider a donation to the Huntsman Cancer Institute in Alisa's name.  https://donate.huntsmancancer.org/alisa-linton

No more scans

It is sad that I am writing this post.  As you have all experienced Alisa is a talented writer and has a special ability to include us in her feelings and emotions through her words.  Alisa has gone down hill the last few days and is not really up to writing.

Two weeks ago Alisa's family fasted for Alisa so that she could feel well enough to attend Kirsten's wedding.  Prior to that day (May1st), Alisa had been in lots of pain and could barely get out of bed.  As she mentioned in her last post, Alisa was able to not only attend the wedding, but participated and helped the entire day. The day after the wedding I knew Alisa had been blessed with health to experience that day with her family, but I felt it might be the last miracle we would witness during her fight with cancer.

We went in for scans yesterday and followed up with a visit this morning.  When Carolyn came into the room she said, "Your scans don't look good, but you probably already knew that."  We did know, but it is still hard to see the proof.  Alisa started to be extremely tired and confused last Thursday.  I also noticed that her eyes had a yellow tint to them.  I finally broke down and googled what yellow eyes mean (besides the obvious fear of being a wolf).  Among other things, liver failure will cause yellow eyes.  I suspected something might be wrong with her liver. They showed us the scans and  the tumor has basically invaded where fluids get into the liver.  This means that instead of the liver filtering out the toxins, they are spreading throughout the body (this may not be medically accurate).  This causes the yellow eyes, swelling in the feet, and confusion.

We were scheduled for another round of chemotherapy today, and we had decided yesterday that we would not be doing it, but Carolyn confirmed and said that her body would not be able to handle the chemotherapy.

So, we are officially out of options.  We have experienced many miracles over the last 8 years and have been blessed to enjoy them with Alisa. 

We will start hospice today.  Carolyn said we are now talking about weeks left.  I selfishly hope that Alisa will somehow hang on a bit longer.  For her sake, I hope she gets to heaven quickly.  I hear heaven is a beautiful place, shortly it will be more beautiful than ever.

-Josh

It has been an interesting three weeks.  Full of good days and bad. 

My baby sister was married Friday.  We were very worried I was going to be too sck to be able to make it.  I had developed sever spasms shooting down my legs.  They hurt like crazy and scared me to death.  This is my parents 9th and last child to be married.  it was very important to me to be there.

They put me on some drugs used for MS and a couple days before the weeding the spasms suddenly stopped and I was able to enjoy time with my whole family.  My nausea also subsided for a few days, as well as the pain from my tumors. 

Right on queue, symptoms have returned.

We just had a thunderbolt hit near the house, and for the first time in our married life we have a child sleeping on the floor in our room.

I am scared, but not unprepared. My legs have started to swell.  I went to the doctor Wednesday and had 2.5 liters of fluid drained from my abdomen.  There may be need for a permanent drain there in the future, because it all seems to have come back.

We are working with Palliative HomeCare and will decide after our next scans if we want to move to Hospice.

We are grateful for all the help we have been receiving.  Truly the world is a kind place that will soften my children's blows. We wish we knew when this was going to happen, but the general consensus from the doctors is that there is no way to know. 

easter

We had a wonderful Easter weekend.  I felt good.  After a few rough stomach days, it settled down.  My pain doctor adjusted my pain pump to a point where I have days that I don't use my bolus injections (the continuos amount of drug is enough).  They put me on steroids which has given me a burst of energy and a crazy appetite.  Sometimes I really feel good.

Easter is a reminder of all that I hope for for myself.  That some day I will be healed and some day I will be whole.  Some day I won't have any metal or plastic inside of me.  Some day my heart will be free of fear and my mind free of anxieties.  

I am not praying that this happens soon, but I am so glad I truly believe in a beautiful afterlife.  

I will try and keep the blog updated with medical changes, but right now maybe not much more than that.  I am working on some other computer projects for my kids and I am not loving time in front of a screen.  

I'm terribly exhausted but I know so many are curious about how today went.  I went through with the chemotherapy (Carbo/Taxol I think, I will have to look it up).  The Dr. thinks he can get 30% of people to respond to it up to 6 months.  A response would possibly get my symptoms in control and we could move back over to the PD-1 or something.  These possibilities are low.  The Dr. said he is now focusing on quality of life more and this may give me some good months.

The chemo won't be bad.  It takes 6 hours to infuse, repeat every 3 weeks.  I think I'll be able to tell if it's working because guess what?  My belly button is a melanoma tumor now.  I've been watching it grow thinking it's becoming an outy because I was getting skinny.  It isn't the one causing pain.  The last couple of weeks we have watched what I thought was a rib tumor grow until it is easily seen and cupped with my hand.  This is where I feel the pain.  There are lots of nerve roots I guess under your ribs so it's a tender spot.  The doctor thinks this is my monster tumor we have been watching just pushing the rib of place.  Awesome.

Because of the pain we get to deal with pain medications.  My pain pump is wonderful, but comes with consequences.  Too tired to go into it, I will later.

I am so humbled by all the kind words written on my last blog entry.  I want to write back to all of you, but the computer makes me so sleepy.  I can't wait to hug and thank you.  It gave me a piece of courage and meaning that I needed today.  It seems like I am always saying "I'm not strong enough for that,"  or "I couldn't do that"  And it may be true, but at the very moment you need that strength, it will be given to us.

I said yes to another round today.  Fresh courage take.

Yesterday our lives changed.  

I should have known it was coming, but something inside fights with ideas like these.  

The biggest indicator was pain.  Pain that came all of the sudden to my back and lingered through sleepless nights.  

It's a familiar pain.  We have always been able to get rid of this.  Nothing to see here, folks.

Except when they looked with an x-ray machine there was a lot to see.  Tumors all over the abdomen, in fact.

Carcinamatosis is what they wrote on my report.

My report.

So now what?  My oncologist called today with a treatment plan to start chemotherapy on Tuesday.  A relatively easy chemotherapy.  You get it at the hospital over a few hours then you go home to suffer the consequences.

Hospice was whispered around the room yesterday.  The word is a whisper. 

If I go that route I do not feel like I gave up.  To just be sicker longer may not be on my bucket list.  If the chemo doesn't offer a cure...I don't know.  We've blown through all my long term response options.

I am scared to suffer.  I don't remember much of my hospital stay this year, my family says I was indeed suffering, but I think my subconscious has details because I cry when I think of pain and uncontrolled nausea and other unpleasantries.  

The way out is through.  Isn't it crazy that everyone on this earth will have to die at some point?  You pray it happens while you sleep, but for the rest of us, we participate.

Miracles have happened on this journey.  Although I love the tumor melting kind of miracle we have been able to produce so far-the miracle of eternity and everlasting life lies before me just the same.  

Pray that I can somehow come to terms with the terms of my little life.  

Pray that I can endure to the end.  May it be miles and miles away, but if it finds me sooner...

This last week we had some dramatic changes to the norm.  Thursday I woke up and didn't need to barf.  I think it is the first day since coming home from the hospital that I didn't run into the bathroom as soon as I opened my eyes.  In fact, I didn't throw up once that day.  And then it happened again Friday.  Saturday I woke up feeling good just the same.  Man were we feeling confident.  So confident I ate a couple pieces of pizza Saturday night, and really regretted it.

We are back to barfing, but not as consistently.  We have our bad days, but can finally mix it in with some good ones.

It's hard to make sense of it all, but I'm doing good and bad.  It's difficult to make peace with your mix sometimes.  So far for me, I have been able to do this.  I pray it can continue.

One of the really good things that's happening right now all around is the valley dressed in Spring.  Another is the easy kids I've been blessed with (we now have a 14 year old in the house, which has had it's difficult moments).  The best thing I have is of course Josh.

One of the bad things that is really getting me down is the stomach issues I mentioned above.  I went the pain Dr. today to get my pain pump checked out and she said these issues are not due to the pain medicine because the pain medicine is just going to the spinal chord.  This was pretty discouraging.  I guess I hoped these were related and as soon as we could get rid of the pain meds the nausea would disappear.  Get rid of the pain pump?  They wouldn't even decrease the dose, even though I feel no pain ever whatsoever.  She says I'm not in pain because of the pump, and we know I had tons of pain, so why would we mess with things?

Another bummer is that we couldn't pull the feeding tube, we just exchanged it for a G tube and ordered a longer J tube should the need arise we can try, try again.  I think it was the right decision.  I am having a hard time keeping weight on and in the case of a couple days I couldn't keep anything down it would come in handy for feedings and medicine.  But a tube sticking out of your stomach is source of soreness and maintenance that is just no fun.

After losing 15 lbs, I think I'm down to 10.  It has been constant diligence to get that 5 lbs. on.  I have an appetite problem.  I just do not feel up to eating  much.  It looks good, but I just can't stomach a bunch of really good food.  I eat a little at a time and even then, there are no guarantees it will stick around.

I also take good long naps, and find myself falling asleep when I sit or lay down.

Although being sick is no fun, it is the worry of why I'm sick that has me down more than the actual illness.  I certainly am starting to look like a cancer patient.  None of my clothes fit in the right places.  My hair will probably need to be shaved (I just keep hoping it's just thinning, and because it's short, shedding is not too annoying) which will complete the look.

Friday I get another dose of antiPD-1.  Let us hope and pray that it is making a difference.  I'm not sure when I get scanned again, I see the doctor next week and I can find out then.  Thanks for your continued hope and prayers.  They mean the world to my little family.                      

#cheersforalisa

Sorry for the delay in posts.  I have been sick and I hate to admit it.  I worry what I look like to other people.  I have what feels like a permanent scowl on my face.  I worry it will show through here as I write.  It's really just from the nausea that I wake up with every morning.  Sometimes it is gone by the evening, and those are good nights, we have even gone out occasionally when we time it just right.

But for the most part I'm home feeling gross.  I sleep quite a bit.  I can't imagine that the chemo is still making me sick, but I hope that is the case.  I don't know, my hair just started falling out this week so I'm thinking maybe there could be some delayed effects from the chemo, and the nausea is also a part of this.  I hope it's not the cancer causing trouble.  

Today specifically we know it's the feeding tube causing the nausea.  I've dislodged it from the Jejunum and it is floating around the stomach and esophagus where it should not be.  This has happened before a couple of weeks ago and it was the most painful experience of my life so far when they put it back.  So I am very upset, and hope that we can just pull the feeding tube altogether.  I am skinny, like no bum, bones sticking out, cancer kind of skinny, and that might be the problem with no feeding tube at all.  

In an effort to cheer me up my BFF has started an Instagram account for me.  I don't know why but TV and computer time while I'm in bed are not at all interesting to me as they have been in the past.  They totally put me to sleep.  But I do have my phone and I love Instagram.  Anyways, please follow CHEERSFORALISA and send your costume pictures in to cheersforalisa@gmail.com.  Jennie can come up with a caption for you (or if you're tricky enough do your own) I would so love to see your pretty faces.  So fun!

I have to send you over to Jennie's other Instagram account dateweekly which was really motivating Josh and I to date on a weekly basis.  My sister Sonja started dating her husband after following.  There are great date ideas, and just reminders of how important it is to have fun and take time with your spouse.

And while I'm pointing you to Instagram accounts, you want to get in on MOONMANDOTCOM.  This little guy will keep your Instagram a happy, beautiful place.  My cousin Stephen is the mastermind behind this project.  Thanks for sharing with us all Stephen!

I need to create my own account of things that made me smiled today.  Because even with a permanent scowl (Josh came up to me this afternoon and tried smoothing out in between my eyebrows "I wish you could just relax your face"),  there are things that keep me smiling.  Today it is Josh baking the weekly bread, coming to ask if each step was done right.  It turned of perfect, of course.  Josh went to work last week for the first time in months.  I missed him so much.

Thanks for your prayers.  We are certainly struggling right now.  I've got to get on top of this and move forward.  I really think I can.  Somehow.

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.

Months?

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.  

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...

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.

-Josh

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

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

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

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.

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

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

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

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.

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?