Tuesday, March 18, 2014

thanks for asking

I am doing well.  People keep asking how I'm doing, and I forget that I kind of leave things hanging on the blog.

My left arm with the blood clot is much improved.  It's not exactly back to normal, but I'm pleased.

The surgeons in the tumor board meeting unanimously said to leave the remaining tumors alone if they aren't growing, as the surgery would most likely result in the loss of the entire kidney.  I am okay with this.  I wanted the surgery now because I worried that if we waited, we would have to take the entire kidney.  But it looks like that could be the case with surgery now.  We can't radiate there again, as the doctor thought we had most likely given the max dose of radiation to that area.

Of course I am still hoping that the tumors will just chill and stay where they are, but in my experience with my cancer, if it isn't shrinking it will eventually grow.

I feel strangely prepared for whatever at this point.  I have already been through the emotions of re-occurrence, and the disappointment of drug failure.  Not to mention the cancer being almost as bad as it can get (brain tumors).  So what can't I handle at this point?

This Sunday I taught Relief Society in my new ward (lots of Mormon lingo here-sorry) for the first time.  We were talking about procrastinating repentance.  I told a little bit of my story.  I told them I had 25 deadly brain tumors, and how the cancer could have taken me in months.  I explained that it was still hard to repent, or change, even though I knew when I would probably meet my Maker (I'm still working on some things, which is probably why I'm still here.  The moral of the story was that change takes time).   Well, I kind of left that I'm not dying anymore.  I forgot to tell them the part where all the brain tumors disappeared.

I have been worried since that someone is worried about me.  But that is just too much worrying.  Rest assured, friends, that life for me is so very good.

Today I got to register for 8th grade with James (middle school halls-YIKES).  And it was 'Eat Lunch With Your Kids' day at the grade school.  Luke shoved all his food in his face to get to recess ASAP.  He left me with a one of his huge hugs a favorite saying, "I love you Mom.  You're the best."  Sam took his time.  He sat and looked me in the eyes and chatted about his funny day at school.  He waited politely till I told him he better run out and get some exercise.  "Thanks for coming Mom!"

This is what I fought for.  This is exactly what I wanted out of life.  Every day I am fulfilled.

"Mom, are we millionaires?"  Oh, Sam.  Practically. 
  




Wednesday, March 5, 2014

stable disease

The tumors have not grown.  Nothing in the brain, nothing new in the body.  The only disappointment my doctor has is that they didn't separate from the kidney to make taking it out surgically an easy decision (those tumors did not shrink).  At this point it would require a partial nephrectemy.  Do we do that now, or wait for three months and see if things improve?  If we wait will we end having to take out more of the kidney to get rid of the disease?

Doctor is leaning toward waiting.  He will talk to the surgeons and get back to me. 

Stable disease is awesome, by the way.  A great big sigh of relief. 

Monday, March 3, 2014

seasonal affective disorder

This week (Wed. afternoon) we will find out scan results.  I expect that we will see continued shrinkage and won't have to do any more treatments right now.  I seriously hope so, this break has been so nice.

I can see changes in myself that are very encouraging.  I have tackled a few projects around the house.   I am no longer wearing a sweatshirt every day of the week.  I have started reading books again.  We even went on an overnight family vacation, which I don't think we have done since school started. 

Truly, I have not been super fun or motivated this year.  I felt pretty happy (except when I was super sick).  Still.  I have wondered if perhaps I was depressed.  Climbing back in bed after I got the kids off the school was becoming a habit tradition.  I really had a hard time finding things that sounded fun to do.  I felt very uninspired.  Then I realized it was February and laughed it off as much as I could, and stayed in bed if I wanted to.  This is just what February does to me.  Cancer aside, it would likely be the same kind of thing. 

It all seems to be improving.  There are signs of Spring (that beautiful Thing!) all around the valley.  Wouldn't good news this week just fit right in?

Tuesday, February 4, 2014

follow up

One more medical update and then I can break from that sort of information until scans in March.

The results of the last scan resulted in a sigh of relief, but hardly a celebration.  Instead of shouting it from the rooftops (which is probably what it deserved) I felt like crawling in bed and taking a 3 day nap.  The worry had worn me out.

I am very pleased with the shrinking tumor, of course.  I have tons of confidence in IPI.  My worry now that I won't get the full benefits from IPI because of the medication they had to give me to stop the colitis (Remicade).  It takes down your immune system very effectively.  When I work it out in my mind it seems like it will undo what the IPI is trying to do.  Because we don't have studies on this subject, there really isn't an answer.  My doctor believes I had enough of an anti-tumor response before I had the Remicade to fight off the cancer.  But we just don't know how it will all play out. 

When I try and research it, this is about all I can find,  "Infliximab is another option for the treatment of steroid-resistant ipilimumab-induced colitis but its use in metastatic melanoma raises questions of its possible impact on the evolution of cancer." (http://www.ncbi.nlm.nih.gov/pubmed/23458760)

I read of people remaining cancer free after Remicade (Infliximab), and others dying of the cancer after.  I just wish I knew how much of an impact the drug has on tumor response.  I would like to know how much to worry about this.

My blood clot arm has much improved.  It is still a little swollen by the end of the day.  I just got some matching compression sleeves for my two arms so I can start working out.  I am a very special looking person right now.

The blood clot stays put and your amazing body creates other paths for your blood to get back to the heart.  Amazing.

Check out the new blood vessels I'm growing.  I swear you could start an IV in my shoulder right now.

I give myself blood thinning shots twice a day for another couple of weeks.  I don't mind sticking myself, as I truly just believe I deserve it.   But it does leave little bruises all over the belly.

The belly that is kind of large from steroids.  Today I get to decrease my dose again and stop taking them altogether in 2 weeks (as long as the diarrhea and nausea stay away-and they have!).  Steroids put fat on you in strange places.  Like by your collar bone and on your back.  And the belly.  I just do not look like myself.

One fun change is a few streaks of pure white hair I found in my head.

We tried to dye them, but it really didn't make much of a difference.  I figure after Frozen, this is going to be an acceptable style for a while. 

I have three of these spots.  I went to get my hair cut because it is falling out like crazy after the medication.  My stylist said this is not a normal way to go grey and I got really excited.  Could it possibly be the IPI?  Some lucky responders lose all the pigment in their hair as the immune system finds specifically the melanocytes to destroy.  It's a good sign.  I'm not sure that is what is happening here (usually it starts in the eyebrows, and mine are as dark as ever), but either way it's fun to dream of getting old.  I do not feel like I will be complaining about wrinkles and grey hair. 

Things look so much better than they did month ago, I am so grateful!  Thank you for all your prayers and support!!

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

connecting

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.