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Thursday, August 29, 2013

"I'll Never Take Anything for Granted Again..."

"I'll Never Take Anything for Granted Again..." is the title of a magazine article describing actor Michael York's battle with amyloidosis.  Michael York has been in a ton of movies including Cabaret, Logan's Run and, most recently, as Basil Expedition in the Austin Powers movies.


He underwent a stem cell transplant at Mayo Clinic in July of 2012 and says in the article that his energy is returning 6 months after the transplant.  He refers to his facial bloating and lack of hair.  I found a photo of him on the internet that shows how the disease has affected him.

He said his swollen face is partly due to his meds but also from the disease itself.  "There are deposits all over," he said.  Boy, do I know that feeling.   Based on what I can tell, the photo above was taken 9 months after his transplant....so I'm doing OK with the hair growing.

Here's a photo from the wedding we went to last weekend in Santa Monica.  I have more hair than appears in the photo because it's pretty grey and the light in the photo washes it out.  When someone comments on how grey my hair is, I steal Al's old line, "I don't care what color it is, as long as it comes in."

It was really interesting to see the similarities between how the disease affected his relationship with his wife and how it affected my relationship with Al.   He said, "I discovered just how very much I love my wife [celebrated photographer, Pat York]. She’s been amazing. Like a lioness. She was so proactive. She had all the questions for the doctors, and she knew the answers – she’s queen of the internet. What she did was such a powerful thing. She’s always been so positively behind me. We have a great relationship. I’ve been very, very lucky."  All of that is true for Alan except being queen, or in his case king, of the internet.  He still gets confused between a search engine and a web browser--"I don't want to use Chrome, I like to use Google." smh

York first knew something was wrong when he had dark circles under his eyes that wouldn't go away.  The medical term for that is purpura and I've had my own battles with that.  Fortunately, I never had it around my eyes which is common among amyloidosis patients.  Mine has been mostly on my arms (and mostly my right arm) and on my chest.  Mine show up as purple spots about the size of a pencil eraser.  I've had up to 12 spots on my chest and 8 on my arm at any one time.  Right now, all of them are fading and I haven't had any new ones show up....touch wood, as Michael York would say.

As each day passes and the physical reminders of my illness fade, I'm more able to leave behind the worry of my disease that has so consumed me at points of my recovery and take the advice offered by my amyloidosis buddy Michael in this Austin Powers video.



"I suggest you don't worry about this sort of thing and just enjoy yourself.  That goes for you all, too."

Oh, and here's another photo from the wedding.  That's the face of me...and Al...not worrying and just enjoying ourselves.




Friday, August 16, 2013

How P90X and Renee Phillips Saved My Life

This is a post I've been wanting to write for some time now.  As many of you know, I completed the P90X program in the winter of 2010.  I used P90X and Renee Phillips' workout classes at the Dublin Rec Center to stay in shape after completion.  I got into really good shape for a then 48-year--old.

I didn't stay in that good of shape but I was pretty trim and muscular up to the point I got sick.  As many of you know, the first sign I knew I was sick was when I discovered my liver was enlarged.  I found this one night when my stomach was hurting and I was pressing around on my abdomen and felt this hard mass.  I asked my husband (the ICU nurse) to come over and feel it and he said, "That's your liver and its not supposed to be like that."

As I've said before, I was so fortunate they caught my disease before it had progressed and caused permanent damage to my liver and kidneys.  If I hadn't been in such good shape and so trim, I probably would never have started on my quest for a diagnosis.  And once I did, it probably would have taken them longer to come up with a diagnosis without the key info that my liver was enlarged.  The only reason I, and my physicians, could feel that my liver was enlarged was because of all the exercise I had done in P90X and Renee's workout classes.

So, I don't expect everyone to go out and do P90X or go to Renee's classes (although you'll love the results if you do) but let me be an example.  According to my doctor, my recovery would be so much more difficult if I wasn't in such good shape going into the chemo and stem cell transplant.  And it was pretty damn hard.

I don't want to be a downer but take your physical fitness and your health seriously.  You never know how it will benefit you beyond just looking and feeling GREAT!

Wednesday, August 14, 2013

Another Step to Normal

I took another step to normal today by going on a "big girl" bike ride with Alan.   I've gone on a few rides on Claire's cruiser bike..

Its a nice bike but its not made for a workout.

It was nice to get back out on my road bike with a cycling jersey, bike shorts and my clip-in cycling shoes.  We set out to ride around Glacier Ridge Park near our house.  It has a nice trail that winds through the park's wetlands, woods and prairie.

I completed the 9.5 mile with an average speed of 12.4 mph.  Not too bad for my first real ride and a good start to get me ready for the 75-mile Pelotonia route next year.  My biggest worry was that I wouldn't get my shoes out of the clips when I stopped and would fall over. Sad to say, its happened before.



But, I made it through with no problems.  It was a lovely afternoon.  Feeling the wind and the sunshine on my face and hearing the birds sing really made me glad to be alive...even more glad than I usually am these days.  :)




Friday, August 09, 2013

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.

Tuesday, August 06, 2013

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.






Friday, August 02, 2013

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.