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...