So now I know...

I had my appointment yesterday with my hematologist/oncologist to check my progress, get the next steps for my treatment and try to find some relief for my liver.

Progress is good and I'm where I should be on my recovery.  All my numbers show that the transplant has stopped the production of the amyloids and my organs don't show any permanent damage.  That's the most important thing and I'm doing well with that.  Dr. Efebera was very enthusiastic with her praise for how well I've done with the transplant.   Now, she's enthusiastic about everything but this made Alan and I laugh.  We told her, "We'd hate to see what its like for someone who did poorly."

I start my maintenance chemo regimen once the chemo agent arrives, probably next week.  It's a pill, Revlimid, I take once a day for 21 days with one week off.   It is highly regulated by the FDA--it comes via FedEx and has to be signed for.  Here is what is required by the prescribing physician to get the drug--

• The prescriber enrolls and becomes certified with Celgene for the REVLIMID REMS™ program
• The prescriber counsels patient on benefits and risks of REVLIMID
• The prescriber provides contraception and emergency contraception counseling
• The prescriber verifies negative pregnancy test for all female patients of reproductive potential
• The prescriber completes a REVLIMID^® (lenalidomide) Patient-Physician Agreement Form with each patient and sends to Celgene
• The prescriber/patient completes applicable mandatory confidential survey
• The prescriber obtains an authorization number from Celgene and writes it on every prescription, along with the patient risk category
• The prescriber writes no more than a 4-week (28-day) supply, with no automatic refills or telephone prescriptions
• The prescriber sends REVLIMID prescription to certified pharmacy

 Supposedly its well tolerated with only rash, fatigue and stomach upset as the common side effects.  Of course there are other side effects that are more serious but much less common so I'm counting on not having any.  I will take this with the steroid, dexamethasone, for 6 months and then re-evaluate after that.  The dexamethasone I take once a week.  It can make me jittery and cause insomnia.  I will also go in once every 3 months for an IV treatment, Zometa, which is a "proven treatment for people with bone metastases from solid tumors and bone complications from multiple myeloma. It can help reduce and delay bone complications caused by the spread of cancer."

So now I know my pharmaceutical regimen for the next 6 months.

Dr. Efebera said there's nothing that can be done for my liver, it will take time for the amyloids to clear out.  She said that she had a patient that it took 3 years for the amyloids to clear from his kidneys.  My liver will never return to normal size but may reduce some over time.  She said that the only thing to deal with the pain was oxycodone, not exactly the best choice for someone who makes a living by solving complex business problems and communicating with executives.

So now I know what to expect from my liver.

It wasn't as good as I'd hoped but the big picture is good and the not good parts are definitely something I can live with.  Alan asked me the other night what I would do if my liver never improved.  I said, "What choice do I have--live with it or kill myself."  I'm so thankful that I have no permanent organ damage and that I had a complete response to the stem cell transplant.   As Amy told me a few weeks ago, I need to fully live the life God has given me.

Wednesday night, I showed Alan the photo I was using for my Facebook profile...

He got quite incensed and said, "Change that now!  You are not a sad little orangutan cowering in the rain."  Earlier in the evening I had shown him this photo, a rare picture of a peacock in flight...

He said, "You are a beautiful peacock flying above all of this."

So now I know how my husband sees me....and I see again how sweet he is and why he's the one God has chosen to be by my side through this.