Wednesday, January 22, 2014

good news

The tumors near the adrenal glands and kidney are indeed shrinking.  They are also looking darker in the middle, which could indicate dying or dead tumor.  The top of the kidney certainly looks less threatened. 

The cancer is retreating. 

Slowly.  The largest mass shrunk from 38 mm to 33 mm.  We would hope/expect to see even more shrinkage in the next scan in 6 weeks.  These immunotherapies often take time.  And really, cancer in one spot it surgically fixable.  

Another bullet dodged.  Another miracle received.  Another reason to hope that this thing might not the unconquerable monster it so often seems.

There was nothing better than sharing this good news with the boys.  I still let them pray every night that Mom's cancer will go away.   Today we are one step closer.

Sunday, January 19, 2014

i can do hard things

So happy to report that I felt good enough for a proper celebration of my 35th birthday yesterday.

My birthday is now mixed with the anniversary of my stage IV diagnosis.  Although this stings a little, I am mostly burning with gratitude and awe in my heart.  Two years ago I learned there was cancer in my bones and liver and scattered about throughout the body.  A cancer that spreads quickly and kills quickly.  I have aged a hundred years since that day.  We have been through a lot.  But how wonderful that we made it through.  A great reason to celebrate!

In my 34th year I was barbecued in Utah (radiation), poisoned in Florida (Pd-1), and butchered in Washington (surgery).  Kind of curious what this year will look like.  I am back up and ready for good old fashioned fight.  Bring it on 35!

I took like 20 photos of myself during all the birthday events.  My steroid cheeks are really special in all but this picture.

Tuesday, January 14, 2014


Well no one really liked my idea to go in and take care of the clot.  Something about risks of bleeding.  For some reason DVTs in the upper extremity have a very low risk of running away to your lungs and killing you (sorry to worry some of you).  The doctor said normally the swelling will go away, as your body reroutes the blood or the clot dissolves, but it may take 6 weeks to see any change.  I really think this swelling could be chronic for me, and I might have matching compression sleeve arms.  It has been pretty upsetting to see another limb grow.

The worst part of this is is that the clot was totally preventable.  I refused the lovenox (blood thinner) shots while I was in the hospital.  They give them to every patient in the cancer hospital (cancer puts you in a hyper-coagulated state).   I didn't want to be poked and I wasn't really a cancer patient because I got up and walked a mile or went to the bathroom every 20 minutes, so I wasn't going to get a clot in my leg.  I wasn't thinking about a clot because of the line.  I am trying so hard not to beat myself up about it, but guilt is almost the worst feeling of them all.  It is very overwhelming and I am trying to learn to let it go. 

On top of this I have had a pain in my right (other side) forearm for the last few days.  Yesterday it was Sam's birthday and I went to get doughnuts for his class, and literally thought about asking for some help because I couldn't seem to twist my arm in and out of the case and bring them back to the box.  I cannot open a jar.  It is swollen.  I would suspect some sort of arthritis with all these immune medications, but I'm on high dose steroids so that wouldn't make sense yet.  At first I was sure it was a tumor, and then I worried a blot clot.  The doctor looked with an ultrasound today and said it is unlikely tumor (thank goodness!), but wants to do an MRI tomorrow to see what exactly we are dealing with.

Next week we peek at the kidney tumor to see if it growing.  I really, really want to keep my kidney and this will be pretty telling.  I will never get IPI again, so this is it's chance.  I am trying not to get unrealistic.  But expectations are high.

This all adds up to a breakdown for the strong Alisa.  Yesterday I called for an anti-anxiety prescription to help me sleep.  It worked it's magic.  This morning I woke up and it all seemed better.  The sun was out and my sisters had cleaned my house and Josh was working from home.  It is all going to be okay.

I feel like I've been in my own little world that doesn't relate to the rest.  As I typed here all this medical news I especially feel this isolation.  What I think about is not what people think about.  What I worry about is not what people worry about.  But what I feel is the same as others.  Bursts of guilt, fear, lose, hope, worry and joy.  Miraculously, two years after a devastating diagnosis I still cry like the rest of you.  I still sigh and panic and laugh.

My own little world is very much a part of a bigger one.  Tears are the proof.

Sunday, January 12, 2014

one thing after another

And I was doing so well!  I woke up this morning to a swollen arm.  Yesterday I called my doctor about all the fluid retention I was having, and after assuring him it was not localized to one extremity, he said I could try and move it around, elevate, and just wait.  But this morning only my left arm was swollen and it was clear that his fear of a DVT (deep vein thrombosis) was more of a reality.  An ER visit showed a clot in the axillary vein where my PICC line was placed.  So they pulled out the line, put me on blood thinners, and we will decide what to do next when I see my oncologist on Tuesday.  The more I read, the more I think that I will want to have that clot (which won't go away with only blood thinners, it just stops them from getting bigger) dealt with more aggressively.  I don't know how often they do this, they say they reserve it for the young and healthy, and those with longer than a year life expectancy.  I kind of think I fit the criteria.  Right now my arm is uncomfortably swollen and I've been told to take it easy till I see my doctor.  This is very hard when the steroids in me want to get up and do.  Josh brought up the TV from the basement to my bedroom tonight.  We have netflixs and some local stations, and I think that will be enough to keep me down for a couple of days.

This year has not yet been what I had imagined.  I was determined to try and keep a daily blog, just to remind myself of all the good little things I experience.  I hope to get there soon.  Health is such a blessing, I feel like I would do anything for a little of it right now.

Saturday, January 11, 2014


Just wanted to let everyone know I am doing just fine.  I have been eating non-stop for a few days, and all that weight I lost over the holidays (12 lbs!) is back and has company.  I have been on high dose steroids for 2 weeks now.  They do crazy things to me, but mostly make me hungry all the time.  In the hospital I couldn't indulge myself, but there is no one to stop me now.  I will start tapering off the steroids next week and we will have a little more normalcy by the end of the month. 

The holidays were very miserable.  When I got to the point that I could not drink without throwing up, and every cell inside of me was parched, I really thought it was the end.  I didn't even care at that point.  When I had a fever, they were worried I had perforated my bowel (this is the danger with IPI colitis) and when they said I may have to have a temporary colostomy bag surgery, I asked if I would be able to eat, they said yes, and I said "Do it!!!"  It did get a little scary.  The reason we haven't tried IPI again was because of this risk.

Of course I should have been excited because in theory my immune system was also going crazy not just on my gut, but my cancer as well.  I was too sick to care.

We will see on the 22nd what this did to my kidney tumors.  I do imagine it helped.  They will never give me IPI again because of my reaction, so I really need this to work.  The colitis may have disqualified me for the Seattle trial.  If this is the case, I think I would try and surgically remove what I had left, and then wait for the anti-pd1 (the drug I took in Florida) to be approved (should be this year) and go back on that.

This last hospital stay was humbling.  When I was in the hospital for IL-2 I could barely walk out of the room most days.  I was pretty oblivious to the others around me.  This time I saw all the tears outside of the rooms, heard the words "treatable, but not curable" passing around the families, saw all the lines and contraptions everyone was hooked up to to keep them comfortable.  Every time I would walk by the room with my name on it (12 laps around the floor is a mile) it startled me that I belonged to this world.  So very grateful to be home.

Tuesday, January 7, 2014


I made it home.  Wish I felt good enough for a great meal.  So happy to be with the boys again and take a bath.

Monday, January 6, 2014


I am eating tonight, it feels SO good.  If all goes well I will be home tomorrow with my PICC line just in case I get sick again.  Thank you for the well wishes. 

advancing diet

We are going to try out some clear liquids this morning, and depending on how that goes, I may be able to go home and do the TPN there. 

I am feeling much better (no nausea and lots of energy) so we hope food won't ruin it.  Thank for all the fasting and prayers, they mean the world to us. 

Sunday, January 5, 2014

conversation tonight with my 12 year old. we were changing ward (congregation) boundaries and were worried we would have to drive to a different building

what's going on?

Thank you for all the concern.  We are still at the hospital hoping things will settle down.  Tonight will be telling.  The doctor will make some decisions in the morning.  If things don't look better by tomorrow we will most likely do the Remicade (Imfliximab) infusion again.  The Remicade is supposed to stop the immune reaction that I'm having.  It usually works.  The first dose usually works.  But my immune system seems to be stubborn.

They are trying to keep me from any drastic measures (we are talking feeding tube or bowel surgery).  They are trying to rest my bowel so it can recover.  Last night they put me on TPN (all nutrients through a central line) so at least I'm getting some nutrients in me.

I would love to write how I feel about it all, but the steroids are messing with my emotions.   I can't trust them.  The only thing that seems constant is hunger.  I haven't eaten since New Year's Eve, and that small meal put me in the ER.  It is pure torture, but I can't take my eyes off of the Food Network, and in the halls I try and follow the meal cart around.  Every food commercial has me groaning.  I will never take food for granted again!!!!

Friday, January 3, 2014


Well, Alisa was feeling really good this morning.  They had even planned on letting her go today at 5:00 pm. 

Then the diarrhea started again at about noon.  They called at 3:45 and decided she would be staying through the weekend.  They will be giving her a TPN (all her nutrients through a central line, nurse friends please feel free to elaborate, or correct my errors.)

They tested her for C-Diff, but that came back negative, so that is good news.  I guess.

They will give her fluids and nutrients through IV and hopefully her bowel will recover enough to let her go home Monday.  If not, they have some plans for another dose of Infliximab.

p.s.  there is a whole new level of fascination with cooking shows.  we have been watching all day. 

Thursday, January 2, 2014

New Years Update

From Josh - again

Alisa started her steroids and has been sick off and on since Saturday.  It seems like the steroids work to make her feel better, but when the drugs wear off she is sick (and miserable) again.

We went to the ER on New Years Eve/New Years Day at 4:00 AM, she had been throwing up and diarrhea all evening and was very de-hydrated.  We were in good company (drunks and others that maybe enjoyed the new year too much).  She felt better after they gave her 3 bags of fluids and some IV steroids.

Then she was sick again last night.  Dr Grossman called this morning and told her to come in for an infusion of infliximab (I think) at 2:00.  When she got here they found she had a fever and decided to take some additional precautions.  They are going to take a scan of her abdomen to make sure there is no perforation, they are also going to admit her to the hospital.  so we will be spending at least tonight here at Huntsman.  I have to say the chairs here are much more comfortable than the ones at the ER and expect I will have a pretty good nights sleep.