Thursday, March 26, 2015

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...






Thursday, March 19, 2015

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.                      

Sunday, March 8, 2015

#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.

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.

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.  

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.

-Josh

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