The Future

Alan, Claire and I went to the wedding of Erica, one of Alan's coworkers, today.  It was good to put on a dress, makeup and jewelry and spend the day out.

The ceremony started with a woman reading this poem.

Your Mother is always with you. She's the whisper of the leaves as you walk down the street, she's the smell of certain foods you remember, flowers you pick and perfume that she wore, she's the cool hand on your brow when you're not feeling well, she's your breath in the air on a cold winter's day. She is the sound of the rain that lulls you to sleep, the colors of a rainbow, she is Christmas morning.Your Mother lives inside your laughter. And she's crystallized in every tear drop. A mother shows every emotion..........happiness, sadness, fear, jealousy, love, hate, anger, helplessness, excitement, joy, sorrow..... and all the while, hoping and praying you will only know the good feelings in life. She's the place you came from, your first home, and she's the map you follow with every step you take.She's your first love, your first friend, even your first enemy, but nothing on earth can separate you. Not time, not space...............not even death!

I asked Alan if Erica's mother was deceased and he said, "Yes, she died from breast cancer."  Of course, that started the tears flowing as I sat there wondering if someone would read a poem like that at Claire's wedding.

I really hate when I go to that place...worrying about the long-term prognosis.  Its been an emotional day as I try to deal with the abdominal bloating that has increased over the last 2 weeks.  It seems selfish for me to worry about the abdominal bloating when my lab work is good and my liver function is good.  How can I worry about something so silly compared to worrying about whether I'll be alive for Claire's wedding?

But I do.  As I look at going back to work, I need to be able to wear my regular clothes and right now that's iffy.  Dr. Efebera said my abdomen would be back to normal in 3 months.  That's July 12 so my abdomen better hurry up with its recovery.  I don't have the time, energy or budget to go out and buy another work wardrobe that fits my bloated abdomen.  I just want things to be simple and work out.  I'm tired of things being so complicated.


So, I need prayers that I can manage my emotions and keep looking to the future with the confidence that a person of faith should have.  Its a daily struggle.

Before and After

I've been blessed to have one of my dearest friends, my former college roommate Deb here for a visit.  She and I have been through a lot of ups and downs together and its been nice to talk to someone who's known me for so long.  She's moving to Mexico next month to start a Montessori school in a fishing village so this time together has been extra special.

As we were driving through the cute downtown area of our little town, she asked if we ever went down there to hang out.  I replied, "We did before I got sick."  It got me thinking about before and after and if my after will be much like my before.   How much of what I could do before will I be able to do after?  Will there even be an after or will my quality of life be permanently changed by this disease?

I've worked hard in my life to not be vulnerable.  I had some rough times emotionally growing up and its been somewhat of a defense mechanism against those times.  Perhaps it created a false sense of security in me that my work and my effort will be sufficient.  This illness has really made me face just how fragile and vulnerable I am, regardless of all my work to minimize that.

There have been times where I've really had to rely on God to get me through....when Alan was downsized in 1995, when my mom died in 1998...but lately things had been running smoothly and, perhaps, I was relying too much on me and not enough on God.  I've had some rough times the last few days both physically and emotionally.  My stomach really hurts when I try to eat a normal amount and it frustrates me that something so necessary causes me discomfort on a regular basis.  Which then sends me into a bad place emotionally because I get frustrated with what I perceive is, at best, a lack of progress and at worst, the return of the Amyloid production.  I get really scared when I think this might be my after.

So, as I told Deb, I walk a tightrope....between needing to eat a lot and not wanting my stomach to hurt, between trying to get back to before but being in the after, between wanting to work hard on my recovery but needing to trust God for the results.  It gets emotionally draining at times and regularly reduces me to tears.  But, I need to face up to the mountain I need to climb and push myself to take the next step God wants me to take.  I also need to stop every once in a while to appreciate how far I've come.

As the lyrics of one of my favorite Christian songs, ''Faith My Eyes", go

So keep' em coming these lines on the road

And keep me responsible be it a light or heavy load

And keep me guessing with these blessings in disguise

And I'll walk with grace my feet and faith my eyes

I pray that I have the strength to trust how God is transforming me so my after is better than my before.

Nutrition Confusion

As I've worked on my recovery since being discharged from the hospital, it's been challenging for me to know what information I should follow.  Being the analytical person I am, I like to look and evaluate the data, synthesize it and choose a clear path of action.  With my liver issues, one of the things I've really tried to focus on is my nutrition and eat in a way that doesn't stress my liver.  The problem is with that is the diet that helps my liver the most (plant based, low fat, low protein) is not the type of diet that will help me gain weight.  So,  I've been overwhelmed trying to figure out what I should eat.

In early June, I called the company that did our landscape redesign to come out and look at a tree that wasn't doing well.  The president of the company, John, who did our design, stopped by to check on the tree. He and I developed a very collegial relationship during our time of working together about 5 years ago and would chat whenever our paths crossed.  I saw in one of our local magazines after he did our design that he had used a nutritional approach to beat stage 4 liver cancer.  Sooooo, when he came in and saw my thin frame and hairless head, we spent more time talking nutrition than landscaping.

He talked to me about the importance of drinking fresh juice made from carrots, celery and other fruits and veggies everyday.  He also told me about the Budwig Protocol, developed in the 1950s by a German biochemist Johanna Budwig.  The diet is very plant based, no animal fat, no dairy except cottage cheese and some cheese, no soy products, no preservatives, no processed foods.  One key of the part of the diet is a mixture of cottage cheese and flaxseed.  This combination helps get the flaxseed oil into the cells allowing them heal.  He also consulted an Amish faith healer named Solomon Wickey who also recommended a very similar diet.  John credits this to beating cancer that his doctors told him was terminal.

I tried to follow the diet for about 10 days but found it impossible to get enough calories.  Between my picky tastes, the reduced volume of my stomach and my general disinterest in eating, I was not gaining weight.  I was so torn in what to do and felt that I had no clear path which really stresses me out.  I wondered if God had sent John to me to show me His plan for my recovery.  If I ignored John's advice, would I get to a point in the future when my health was declining and regret not following John's advice.  Would God look at me and say, "I sent you someone to point the way and you ignored him."  Would it be the Kathy version of the story "God Will Save Me."

Or, was following John's strict dietary advice making God too small, in essence saying, my recovery is in my hands and it will be totally dependent on what I do and not what God can do?  The whole situation had me really stressed about how to use food to enable my recovery.  I really wanted to do what God would have me do....I just didn't know what that was.

So, after some prayer time and discussions with family members and close friends, I've decided to focus first on gaining weight.  Unless I gain weight and get stronger, my long-term recovery will be delayed.  I am drinking juice that I've juiced every morning and eating the cottage cheese/flaxseed oil mix every day...almost.

After I'm closer to my target weight, which right now is 20 pounds off, then I can re-evaluate my long-term diet to protect my liver and use better nutrition to fight my disease.  I'm now moving confidently with this plan which I pray will be the plan that will contribute most to my health.

More Progress

Progress continues and I'm getting stronger every day.  I am a bit frustrated that I haven't been able to gain weight.  I'm eating over 2,000 calories per day and my weight won't budge above 106 pounds which is about 25 pounds below my normal weight.  Alan says a lot of energy is being directed toward healing and I just need to be patient....which isn't my strong suit.

I've been able to walk 2 miles and have biked 5 miles so I'm really building my endurance.  I use the elliptical about 10 minutes 3 times per week so that's good progress, too.  I also do ab workouts several times per week to get tone back to my stomach after having it so stretched out from my fluid issues in the hospital.

I went into the office today for a meeting with my boss, my peers and his boss.  It was great to think about something other than my health and food intake....and, I wore regular clothes.  Here I am before I went in.  i was wearing the lovely hat that my daughter Amy knitted me for my birthday.

Please continue to keep me in your prayers/positive thoughts.  It means a lot to me and I can feel the healing energy.  I also ask your prayers/positive thoughts for my friend Robyn who is also facing a health battle.  She's been my inspiration.

Help My Unbelief

Immediately the father of the child cried out, “I believe; help my unbelief!”

Mark 9:24

This verse sums up the roller coaster I've been on since I saw my liver doctor on Wednesday.  I've noticed that my liver has been prominent and enlarged but I thought it was just more noticeable because I've lost so much weight.  When I saw Dr. Levin, he had a very concerned look on his face as he examined my liver and expressed concern over how firm it is.  We asked him questions about whether it could be something minor that would resolve over time and he was non-committal about that.  "We'll have to see what the test show."

So he ordered several ultrasound studies.  Originally, I had the ultrasound scheduled for June 19 but the not knowing was driving me crazy so I called yesterday to see if they had any earlier appointments.  They had one today at 1.  They thought I might want one earlier in the day since I couldn't eat or drink after midnight before the test but with the worry I had, I one have fasted an entire day to get the test done.  Score: God 1, my unbelief 0.

Over the last few days Alan and I both were researching the prognosis if I did have cirrhosis.  It wasn't good and I was getting more and more fearful with each hour that passed.  It bothers me so much when I get that way.  I want to trust God so fully but doubts creep in and take me to very scary places.

I had the studies today and sent a message to my doctor asking if he would call with results before our next appointment.  At 5:30, I received a message that everything looked normal.  There was some abnormality in my liver but he said "it may always be that way and never be a problem for you."  Score God 2, my unbelief 0 (and that's just the score for this round).

And, just a note that my doctor is emailing me results at 5:30 on a Friday afternoon so I don't have to worry over the weekend.  How wonderful is that?!?!?

I was (and still am) in tears from relief.  I've probably cried more over the last 3 months than I have in my whole life. But, that's not a bad thing because they've almost always been tears of joy and relief.

Thanks for all the prayer support and positive thoughts.  It's making a difference!