Day 260: Liver Update

Friday's clinic labs showed a glorious (two week) trend: Ian's liver appears to be healing! 

We are back to smooth sailing. So thankful!

Ian here...

"Oh my ~!  What was I thinking?", Christy said as she was in labor with Fiona.  "I really wanted another baby.  How did I forget about all this?  I remembered labor with Asha so pleasently."  That's how it is.  You forget.

This morning was full of sunshine.  Life has been in a wonderful place of normalcy.

I got into the UCSF clinic today for my weekly appointment.  I was walking down the long hall which is lined with many little doctors' exam/consultation rooms.  In one I spied another patient who I had met in the hospital getting an allogenic BMT (Bone Marrow Transplant from someone else) about the same time I did.  I saw her 3 weeks ago in the clinic.  She looked great.  We were both doing great.  Now she was not.  She looked grey and yellow next to the healthy rouge of her husband's skin.  There was a big cut in the middle of a shaved patch on her head.

I stopped, glad to see them but I quickly wanted to know what was going on.   Ehhh, I did not want to know.

She has AML like me.  But it came back.  It's in her spinal fluid.  A growth of it was in her lower spine making it so she could no longer walk.  They are giving her chemo through a sub dermal port they installed in her skull (hence the incision in her head).  There are other tumor like things on her belly.  Maybe they'll give her more stem cells from her donor.  It didn't sound good.  She didn't look good.  It was good to see her, but not this.

We talked about what our doctor tells us.  He doesn't always answer our questions easily.  I asked her how much time she had when she was diagnosed and started treatment.  Doc gave her about 24 hours to live, maybe 2 days, something like that.  Some of the other doctors said it was too late to treat her.  Doc finally told me my prognosis a month or two ago: I might have had a week or so to live if I hadn't started treatment when I did.  When in a duel with AML, its like a pit bull charging you, you only get a chance to fire one bullet -- don't waste it, and don't miss.

I forgot about many of the things I've been through; I don't want to be reminded.

I'm reading the blog of someone going through an allogenic BMT right now.  I'm reminded of the feeling of someone jumping down my mouth and throat with a knife, slicing me up, because the chemo killed and removed 2 mm of flesh from my mouth, tongue and throat.  I remember not being able to swallow without wincing in pain.  Oh, and that suction tool from a dentist they gave me so I didn't have to swallow,  I forgot about that too.  It would hiss at me while I was sleeping.

How did I forget?  Why do I have to remember?  It was sunny in Sunnyvale when I left,  San Francisco is grey.  That's how I feel inside.  I had been making plans for the next years.  Now I'm thinking what I may get to do for the next week or two if I live.  Sometimes I forget that I'm going to make it through this.

I had my blood drawn, and my appointment to talk about my results.

This is my first week off of immunosuppressants.  It's precarious.  They want "Graft Vs Leukemia" (GVL), but that comes with the possibility of GVHD (where my new immune system can attack my liver).  It's looked at as a good omen if one has some GVHD since it's so highly correlated with GVL happening -- which is the whole point of having a BMT.  My immune-system was not able to recognize and kill Leukemia, so we need another one that can, we want GVL.

Back to my results.  My liver hasn't been doing so well the last few months.  The Doctors figured that if my liver was doing better this week, then we could chalk it up to toxicity from some of the medications that I stopped doing a week ago.  No such luck.  It's worse.  :(

I'm told that the liver cells have unique chemicals in them, and that when they die they release those chemicals into the blood and that can be measured.  If the levels rise, there are more cells in the liver dying.  Here are graphs of two of those chemicals, the spike in the middle of march was from when I had SOS.

The doctor isn't going to put me back on immunosuppressants yet.

I was using the restroom on my way out of my appointment, where I realized my hair is falling out.  Yeah, I can pinch the hair on the back of my head and slide my fingers off and I end up with about 13 hairs.  It works on my arms too.  What the heck?  I'm not on chemo, this isn't expected.  So I went and found a doctor.  He ordered thyroid tests.  I gave him a confused stare.  But he didn't tell me any more.  He smiled, said I looked great, like they hadn't ever done anything to me.  

"Thanks, you're a sweetheart," I said.  He is.

I went home.  I often feel my emotions physically before I can feel them emotionally.  I felt like something was leaking inside my gut.  Like a big abscess of uneasiness, a leaking in my gut, my mind races.  It's going to be hard to fall asleep.  I think I feel my liver.  There's tingling/numbness in my toes.

I look for shelter from anxiety.  I know where I usually find it.  I've spent along time thinking about what I want to do with the few days I might have left to live.  I have plans for the years ahead, but things change, I have to adjust my plans down to days.  I want life!  I've spent many days doing things but not really living.  But I want to really live.  What I want for the next 10 days is the same thing I want for the next 10 years.  I want life, life that contents and satisfies my soul.

There is wisdom in the Christian tradition that says, "Guard your heart beyond all vigilances for from it flow the sources of life."  There are two things said here, 1: guarding beyond all vigilances, and 2: the sources of life.  (1) Of guarding it is said to do it beyond all vigilances.  I can be vigilant to guard my relationship with my wife.  I can be vigilant to be present with my kids.  I can be vigilant to pursue my career and my work.  I can be vigilant to pursue my physical health.  But it says beyond all these vigilances be vigilant to guard your heart.  This speaks of the priority of this vigilance, the importance of guarding your heart.  (2) Of the source of life, it says that it flows from the heart (soul) and that one must protect this for it affects all the other pursuits one would care to be vigilant about.  It says that there is a source of life, which when fouled, all the other things one is vigilant about will not have life in them.  The wisdom says that one can tend to this source of life and keep it flowing pure and springing with life, or it can be stopped or fouled.

Guarding the springs of life is a practice of gazing upon eternal truth.  Plato talks about it saying, the immortal soul soars upwards into the heavens, there to behold "beauty, wisdom, goodness, and the like; and by these the wing of the soul is nourished, and grows apace; but when fed upon evil and foulness and the opposite of good, wastes and falls away."  Plato is right, starving the soul or worse, gazing upon filth, will bring lifelessness and death to all the other things one pursues, but gazing upon eternal truth will nourish the soul.

Things in life keep changing on me.  How much longer will I have till I meet death?  Yet one thing does not change, life itself.  The changes in life cause me anxiety, but beholding life and truth who does not change, I find shelter from anxiety.

When I behold truth, I am filled.  If my soul is a cup then it is filled as I gaze upon truth.  It overflows and I cannot contain it.  That's why I break my silence to write to you, my cup overflows.

I guard my heart, and Behold!

Day 237: Goodbye, Posaconazole!

I am thankful to say we've had smooth sailing these past couple weeks with no further sickness in our family and no reaction to reducing Ian's immunosuppressant. They stopped it entirely this past Friday and so far so good. VERY good news!  THANK YOU for your prayers!

Stopping the immunosuppressant means he no longer needs to take several other medications, one of which has been the daily scourge for Ian since transplant. Morning, noon and night he had to eat something fatty beforehand for this medication to take effect, and each time he had to meticulously swig a couple ounces of Odwalla Superfood immediately after swallowing the loathsome spoonful of sweet, syrupy, anti-fungal fluid. All commotion in the house had to stop during this ritual and we had to give at least a good six feet circumference of personal space around Ian as we respected the intensity of energy it required for him not to vomit while choking it down. Three times a day, for about 237 days.  Every clinic day, every camping trip, every time we left the house for any length of time we had to make sure to pack fatty foods and a sufficient supply of well-chilled Odwalla green drink.  We were excited to finally cut all immunosuppressant last Friday, but honestly I think we were even more relieved to hear he no longer has to take posaconazole!

It also turns out that Posaconazole is fairly toxic for the liver, and they are now thinking that this may be the cause of his liver issues. They will test him again this Friday and we will see if his numbers are any better after a week off of the medication. If this is the case it would be good news, meaning it isn't SOS or GVHD. So far his liver function tests remain elevated but have not increased significantly. He is taking huge quantities of green tea extract and after seeing if there is any change on Friday from dropping the posaconazole, we plan to begin other natural liver cleansing herbs including milk thistle.  He wasn't able to start these herbal supplements while still on immunosuppressants, but now that he is off that delicately balanced cocktail of medications we have a lot more freedom to explore the world of natural health support. 

It will still take a while for Ian's immune system to develop now that it is no longer suppressed, which means he is still in the danger zone for GVHD and quarantine is still in effect. The doctor says he should be ready to re-enter the social world of work/church/etc. around December 1st if all goes well. Asha is planning to celebrate his re-entry with multiple trips to the Santa Cruz Beach Boardwalk and Happy Hollow Park and Zoo. That might be a bit too much for him to start with, but I'm sure she will be more than thrilled to return to occasional park days and play dates and general freedom from the imminent danger of germs! 

We have really enjoyed this time of slowing down, being home, and being together. Part of me is sad that we are getting close to the end of this special season of togetherness.  It has felt like a cozy chrysalis for our family.  Ian and the girls have bonded like never before.  Part of me wishes we had another year to grow together in this protected space. But another part of me is also excited for another milestone crossed and a new beginning ahead.  And everything in me is filled with gratitude for how well Ian is doing and the progress he has made!