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!

So far, so good

Well, I must be feeling better because I feel like blogging.......its been a rough month and a half since I wrote anything of substance.  I can say the stem cell transplant was the hardest, darkest road I have ever had to travel.  I still start crying when I think about some of the dark times.

As many of you know, I was fighting fluid imbalance when I went into the hospital with a lot of abdominal bloating.  I said I looked 8 months pregnant.  Well, when the transplant started adding in fluids...fluids to carry the chemo, stem cells, antibiotics, antifungals, etc....it looked like I was 9 months pregnant with octuplets.  This put incredible strain on my abdominal muscles and they were stretched to the breaking point.  Which caused lots of pain there as well as incredible back aches where they attach to my spine.  My legs were swollen to about 4 times there normal size as well and they hurt so much.  Portions are still numb from the nerve damage due to the swelling but the doctor said that should resolve over time.

My true body weight was probably 105-110 pounds (I normally weigh 125-130) but the fluid had me weighing 170 pounds.  That's 60-65 pounds of water.  Al and Amy and the nurses were on me to walk but I was so physically diminished and had 60 pounds of weight in my mid-section and legs, no wonder I couldn't.

My husband and my daughter brought me through those dark days with their nursing and medical knowledge and encouragement.  Having them to take me to the shower, change my gown and thread all the tubes and wires through, ask the right questions, help me with other issues was a God send.  I told Alan that I know he saved my life because I don't think I could have made it without the nursing care he provided.  Amy was there every night.  Some nights, I barely knew she was there but she came any way always humming "Surely the Presence of the Lord is in this place."  That brought me such comfort.

My primary nurse at the James Cancer Hospital was a perfect nurse for me named Bonnie.  She was equal parts pragmatic compassion, experienced professional and great sense of humor.  At one point toward the end, they sent me to drain fluid from my abdomen.  They took off 5 liters.  Think about that in the soda aisle at the grocery store.  It provided a lot of relief but changed my dynamics so much it was hard to breathe, almost to the point of panicing.  At one point, Bonnie was in there by herself and she asked how I was doing and I told her I was scared.  She told me as she hugged me, "You'll be fine.  From what I've seen you're a fighter and that's what you need to be."

After 4-1/2 weeks, 3 of which I was basically bedridden, I transferred to the rehab hospital to regain some strength and function.  Originally they said I would be there 2 weeks and 2 days.  I asked them early on what I needed to do to get out after 1 week and 2 days and I did it.  I was more with it there.  Amy came every night and every other night helped me with my shower.  She changed my sheets one night when the staff hadn't done it.  She was such a comfort to me.  I asked her as she was drying me after a shower, "Did you ever see yourself doing this?"  She said, "Maybe when you were 80 but not at 50."  We had a good laugh over that.

Alan was there every morning to help dress me and meet with the doctors and every evening to help me with whatever was needed.  It was a little easier on him than when I was so sick in the transplant unit.  He told me later he had never been that tired in his life which is saying a lot for someone who works nights.  It was such a blur for both of us but the rehab hospital allowed him some time to catch his breath.

I came home on May 8 and have been doing home PT and/or OT every day and outpatient PT & OT twice per week.  It was slow going at first.  I left rehab being able to walk 500 feet.  Yesterday, I walked 1/3 mile around the neighborhood.  I left OT today and the therapist told me I'm an example of why its good to be in shape before you get sick.  I can progress through things so much faster. She's having a hard time coming up with exercises to challenge me.

So, day by day, I do normal things like go to the grocery store, cook a little, drive Claire places...or let her drive me since she has her learner's permit.  I'm sad I missed her entire freshman Lacrosse season.  She ended up playing varsity, was the second leading scorer on her team and got first team all-conference and second team all-district.  But, because Al was on FMLA, he made all her games which he normally hasn't been able to so there's the silver lining there.

I appreciate all the cards, gifts and most importantly the the prayers and positive thoughts everyone is sending my way.  It provided so much strength during the dark times knowing I had so many people rooting for me.  I hope to be back at work by the beginning of July and plan on going to Claire's lacrosse tournaments this summer.  That will be the beginning of a return to normal.....whatever normal is.

Slow Progress

Improving every day but progress is slow.  Still have limited endurance and I'm not doing much beyond my physical therapy. But slow is better than no progress so ill take it.