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.

Meltdown, breakdown, beatdown

Its been a rough few days of ups and downs.  I was in so much abdominal pain on Sunday I could hardly bear it.  The borders of my liver were so tender that it even hurt when my shirt brushed against it.  Yesterday I was feeling better but this afternoon I was feeling achy, lethargic and my stomach was hurting so bad.

I made a chicken enchilada casserole for dinner but was so afraid to eat it because I didn't want my stomach to hurt more.  I had a meltdown in the kitchen while I was cooking, crying and sobbing and arguing with God.  I have tried so hard to stay positive and thankful that I'm alive and that my long term prognosis is good but I'm tired of the constant pain that ranges from a dull ache to practically debilitating.  Tonight was one of the few times when I got angry with God about how unfair this is.  I feel so lacking in faith and trust when I do that.

Claire heard me and came down to give me a hug and some words of encouragement.  Alan was at work and I hate when the task of trying to help me deal with my disease falls to Claire.  She doesn't mind but its not fair (there's that word again) that a 15-year-old should be the one comforting her mom through this.

I have an appointment with my oncologist on Thursday.  I'm hoping she can come up with some answers but I'm not counting on it.  As my gastroenterologist said, there's so much going on in my abdomen its hard to know what's causing what.

So I'll appreciate the good days and try to trust God through the tough ones.  Please continue to pray for my health, strength, attitude and faith.

Long term forecast: clear; short term forecast: partly cloudy

Its been a week of tests which always leads to periods of anxiety for me.  Thankfully, the important tests showed no abnormal proteins in my system so my bone marrow is behaving and not producing the abnormal proteins.  As has happened at each point in this journey, God has cleared the path for my ongiong recovery.

It seems that it can take up to a year for the amyloids to clear out of my system.  That means the bloating could come back but my kidney doctor assures me it won't get as bad as before.  It was so painful and debilitating before that any mention of its return creates a post-tramatic stress disorder reaction from me.  My reaction is very irrational and much more extreme than the threat warrants.  I know this in my mind but my emotions get the best of me.

I'm assuming that it could be up to a year for the amyloids to clear from my liver and I have hope that my liver might reduce in size and firmness.  I'm not holding out for it to return to normal but smaller would be welcome.  My abdomen is still such a wreck.  I have a place under my ribs where my liver protrudes and that is really sensitive.  My lower abdomen is a mix between numbness and achiness which is odd.  It doesn't need to be totally normal, just not hurt when I touch it or something brushes up against it.  I'd also like to sleep on my stomach again which is impossible now because of my liver.

So, I can look into the future knowing that, right now, the long-term forecast is clear.  I just need to weather some of these minor storms on my road to recovery.

Damocles

Tonight, I was doing a little internet browsing on Amyloidosis remission and I saw a link to a clinical trial at Ohio State that is gathering information on amyloidosis treatment and patient outcomes.  This statement in the "Purpose" section of the description of the trial was a bit of harsh reality tonight...

"Because nearly all myeloma and amyloid patients relapse and treatment is eventually unsuccessful"

As I said in my last post, it almost always comes back (I think I saw one stat that said 4% of cases don't eventually relapse) its just a question of when.  If I can't be in that 4%, I want the when to be very far off in the distant future.

It reminds me of the Greek legend about the Sword of Damocles.  The king, Dionysius, let Damocles switch places with him so Damocles could feel the king's fortune and power.   But, Dionysius arranged that a huge sword hang over the throne suspended only by a single hair from a horse's tail.  As Cicero asks when referring to this story, "Does not Dionysius seem to have made it sufficiently clear that there can be nothing happy for the person over whom some fear always looms?"

Its only through God's grace and my trust in Him, feeble it may be at times, that I can find happiness even though this looms over me.

n=1

I had a great appointment with my favorite physician, Dr. Doug Levin.  He is the Gastroenterologist/Liver Specialist who originally diagnosed the Amyloidosis.  He was also key in resolving the fluid retention problem I had in the hospital.  Whenever the other specialists seem to be tripping over themselves or aren't in agreement with a course of action, I call on Dr. Levin to sort things out and set an effective course of action.

This was just a routine follow-up but I wanted to talk to him about the lower abdominal bloating and the fact that the urine in my protein has been increasing.  The increased protein is scary because that could indicate that the amyloids are back and are causing my kidneys to leak protein.  This has been on my mind since the kidney doctor mentioned an increase in protein on Thursday and ordered tests for Monday that will determine if the amyloids are back.  Yes, the transplant worked but what I've learned with this disease is that it comes back, even after transplant.  The key is how long it stays away.  I sure was hoping for more than 3 months.

Of course, Dr. Levin shined a ray of hope.  He said the increase in the protein was "unremarkable" and its normal for it to vary.  He said I still wasn't anywhere near where I was before.  Mondays tests will confirm its just normal variation.

We talked about the size and firmness of my liver.  I told him its like living with a concrete block in my abdomen.  My liver is so much larger than normal and hardened that its rearranged the organs in my abdominal cavity.  When I asked about my lower abdominal bloating he said, "Your intestines are shoved into your right hip pocket."  So out is the only way for them to go when I eat.

I asked him if there was any cases where the liver returned to normal size and firmness as the amyloids cleared out and the liver had a chance to heal.  He told me that there isn't enough history with amyloid patients living that long to really have any studies that show that.  He said he's treated several amyloid patients during his career "but right now its n=1 and you're the one."

So, I have an upper endoscopy on Monday to see if there is a yeast infection in my stomach and intestines.  Dr. Levin will also biopsy my stomach to see if the amyloids have cleared out.  I'll get the results by Wednesday that will tell me whether or not my blood is producing amyloids.

I was a little freaked out by the prospect of the amyloids returning but, after about a day, was able to find my trust in God and that's what I'm holding on to right now.  Early on, God told me He's got this and He has smoothed every bump on the road so far.  I know He's got this one.

Good Reminder....

Ready for Easy

Last week I was really optimistic that I had turned a huge corner by getting a handle on my abdominal bloating from the anti-fungal medication the doctor had prescribed for me.  It seemed that yeast had infiltrated my GI tract and that was causing the bloating.  The medication they put me on can cause liver damage but my liver function was good after 1 week on the medicine.  I finished the medicine on Saturday and the bloating and yeast came back on Monday.  Soooo frustrated.

My oncologist is going to put me on a higher dose of the anti-fungal medicine, wants me to have a weekly liver function test and an upper endoscopy.  More risk to my liver, more blood test and yet another procedure that will involve an IV.  After all the sticking and needles in the hospital, I was hoping to go a little longer before getting stuck again.

While I'm happy with my overall prognosis and progress, these ongoing issues are starting to wear me down.  Alan told me tonight that I've won the major battle and I just need to get through these skirmishes.  I've always been a fighter but its now going on 6 months with my abdomen being painful/uncomfortable and eating is a chore.

I will keep moving forward and fighting whatever I need to fight but I'm ready for easy.