Day +60

Yesterday, thanks to a gift certificate someone gave us,  our family went to breakfast at Cafe Patachou on the Park. It is one of our favorite breakfast places. Brad and I split one of the delicious omelets that comes with a cup of beautiful fresh fruit. When the omelet came with a parsley garnish on top, I did not freak out. I am so used to asking for no garnish on my food that a sprig of parsley seemed like a treat. (I didn’t eat the parsley – not a big fan of the raw taste!) I also ate the pineapple and oranges out of my fruit cup. The funny thing was that I couldn’t bring myself to eat the fresh strawberries. All I can hear in my head is the doctors and nurses telling me that strawberries are the worst and reminding me about all the fuzz that still grows on them after you rinse them and put them in the fridge. People with proper immune systems have no reason to be afraid of strawberries, but I still don’t have confidence in mine. Eventually, I may work my way up to a strawberry.

I had been craving tacos for some reason recently, so last night I made a taco with chorizo, salsa, fresh onion, fresh avocado and sour cream. It was delicious! We didn’t have any lettuce in the house until Brad and the boys came home from church last night. A wonderful friend sent me a bag of fresh lettuce from her garden. It is so beautiful.

I will be taking baby steps with eating. Enough about food. I am still suffering from a cold – just congestion and sinus pressure. I am more tired than normal and want to rest more, so it doesn’t get worse. While my family is out doing things, I am resting at home. On Saturday the boys were able to spend time with my cousin and her kids visiting from Boston. My parents drove them to Brownsburg where they spent a few hours in the pool with cousins they rarely get to see. They had a fantastic time. Brad went to Ohio with some friends from church to attend a memorial service for the father of a good friend of ours. I wish I had been able to go to these two events, but I have very talkative family members and they filled me in.

I am going to the doctor tomorrow, so I will try to update you all about where my counts are.

Laura

Continuing the Journey

Laura has been writing lately so I thought I would add a little bit about what’s been going on with me.  About 3-4 weeks ago, I reached my limit in this journey.  I thought I had been doing fairly well, which I think I was, but didn’t realize that there were things bubbling up inside that needed to be addressed.  I do believe that there are some things buried deep within that cannot come out except through stressful and intense times.  This is usually what makes difficult times even more difficult.

So what I discovered is that I needed to get away and deal with my soul.  So when Laura’s friend Debbie came to visit from Philadelphia, and the boys were both gone on vacations, I decided to leave and spend some time with a friend in Chicago.  During that time, I spent time praying, thinking, crying, and reading.  It has been a long time since I just had a good cry about the past several months and had time to think about it all.  But God revealed some serious things in my heart, stuff that I was avoiding dealing with.  This was a great time for me to stop, face those things and get some direction as to how to deal with my soul from this point on.  I say it was great but it was also painful.  It felt like having a deep wound cleaned out with salt.  Good to have it cleaned out but painful to go through.

What God revealed to me was that I had been relying upon needing other people to need me in order for me to feel value for myself.  It’s normal and natural to want people to need us.  There is nothing wrong with that.  But what I was doing was determining whether I was of any value or not based upon how much people needed me.  This is shaky ground to stand upon and I realized I needed to revisit what is true — that my value is totally based upon the fact that I am dearly loved by God and not upon whether I accomplish anything in life or not.

There was more that God was teaching me but this gives you an idea of what I was going through as I got away and worked on my heart.  My challenge now is to come back and not just fall into the same patterns of behavior.  I do need to make some changes in my life and have some better direction not based upon what I was trusting before (i.e. others needing me to give me value).  So your prayers for this in my life would be greatly appreciated.  Know that good things are taking place in all of my family’s hearts as we go through this time in our lives.

Love,

Brad

Day +55

If my counting is correct, I only have 5 more days until I am off of my food restrictions. I have asked two of my doctors what the difference is between  day +60 and day +100 as far as restrictions go. From what I understand day +100 is when I can go out into public a little more and see more people. Day +60 is mostly lifting food restrictions and not having to wear a special mask when I walk through the hospital.

Right now I am fighting a cold that is mostly congestion with an accompanying sinus headache. I am allowed to take Sudafed, which helped the congestion but kept me up all night.

I went for my weekly doctor appointment today to get my weekly dose of IV antibodies (IVIG). They give this to me to support my immune system while it is recovering. It takes about two hours for them to put this in through my port. Today my nurse asked me if I would let a new nurse, in training, access my port, so she could get “checked off” on that skill. What am I supposed to say as someone committed to education? I said yes to being a human experimental pincushion! It really wasn’t a big deal, and she was great and got it on the first try.

My white blood cell count had gone down from the week before (from 4000 to 3400) but my hemoglobin and platelets were both up. The nurse said it was normal for the white count to fluctuate like that. I am not supposed to worry.

I am tired but hanging in there.

Laura

Day #48

I am finally back from being gone for ten days.  I can’t say it was refreshing or rejuvenating but it was good to get out west and visit my family which I haven’t seen for over a year and a half.  My mom, as some of you may recall, has been battling Lewy-Body disease for quite a few years now.  She moved into a nursing home last June and I haven’t seen her since she moved.  I’m very grateful for where she lives now because the staff at the nursing home are very good to her.  There’s peace in my heart knowing she’s receiving great care.  She is getting fairly close to being in a vegetative state.  We don’t understand most of what she says and she hallucinates a lot.  She breaks into times of crying and sobbing for unknown reasons and can sometimes be inconsolable.  I was glad to see what life is really like for her and for my dad.  I better know how to pray.

We heard some good news from Laura’s doctors this past week.  Originally we were informed that if Laura was going to experience a graft vs. host disease reaction, she would experience it between day 60 and 100.  The doctors clarified that for stem cell transplants, this is the case.  But because Laura had a direct bone marrow transplant, the reaction strong reaction should occur before day 60 if it’s going to happen.  So far nothing has happened and the doctors don’t think anything will since it hasn’t yet.  She’s only had some minor reactions, like skin color changes and other skin issues which are normal and expected.  So basically Laura is doing well and may not experience any severe reaction.  What a blessing and comfort to us!  We feel like we are turning a corner.  I, for one, feel some relief and I believe Laura does too.  It’s hard to have a full-blown celebration as anything can change any minute but we do feel like things are going well and it’s something to be thankful for.

So thanks for sharing in our joy and faithfully praying for us all of these days.  We will continue to keep you updated if there are any changes of course.  We love you all!

Brad

My Counting Problems

I was off on my days when I posted last time. I don’t know if it was chemo brain or wishful thinking. For those of you who are keeping track (mainly me, since I have a date with a salad!), Saturday, June 14th is Day +45.

Brad and Micah decided to come back tonight. It was too stormy across Missouri and Illinois yesterday.

Laura

Day +46

It is only 14 more days until I have some of my restrictions lifted. I distinctly remember Day 6: I was moaning about how I was only one-tenth of the way to 60 and that I could never make it. Some things are horrible, but you just have to keep walking through them. Sometimes you do reach that light at the end of the tunnel.

I went to the doctor on Tuesday and received all good news:

• Blood counts look good. It seems my new marrow is making all three kinds of cells.
• My kidney function is improving. The adjustments to my medication are helping.
• I only need to go to the doctor once a week now. This is amazing since I have been seeing some kind of health care professional everyday since the end of March. I had recently been moved to twice a week, but now I am just going on Tuesdays!
• I have lost 61 pounds since last fall. This is good and bad. A bad way to lose 61 pounds. Also bad  realizing that after losing 61 pounds you could still stand to lose 20 more (or so the scale says). Good in that my body will be in a better state in at least ONE way after I finish treatment. Also good in that obesity is a risk factor for many cancers that I have to watch out for now. I am also glad that I had 61 pounds to spare. The chemo and bone marrow transplant have been very brutal on my body. Some people that come into the bone marrow clinic are skin and bones and much weaker than I am.
• The doctor said I looked great. I told him I was anxious to get out and do some things. He said, “Like what?” He had not been thrilled that I told him I went to the grocery store one day. I told him that I wanted to go and sit at the new library downtown for a change of scenery. He said that would be fine. Yeah!

Noah came home late Monday night after having a fabulous trip out west with friends. It is nice to have him home. Brad and Micah are still in Lincoln, Nebraska. I think they are heading back on Friday. This has been a refreshing trip for Brad, who has been faithfully taking care of our family through my sickness without a break for almost 8 months. Thanks for your interest and prayers. I have felt very loved and taken care of during this whole process.

Love,

Laura

Day +37

I am probably in trouble for not updating you sooner on the results of my bone marrow biopsy! The doctor said that everything looks great. No signs of leukemia and all my marrow and blood is from the donor. My blood counts continue to go up SLOWLY. The doctors and nurses say I am doing great for Day +37. All good news! There is still a huge risk for infection until Day +60. Day +100 is a good marker, because the mortality rate dips way down at that point. Most problems happen by Day +100. The only bad news I received today was that my kidney function is kind of borderline right now. I am not sure what that means, but the doctor said to make sure I am drinking 2 quarts of liquid each day. They warned me that this was one of the side effects from the medications I am taking, and some people end up on dialysis.

I am now allowed to drive (My platelets had to be over 50, 000.), but Brad took our only car on a retreat and out to Kansas and Nebraska. I will have to wait until next weekend to begin terrorizing the roads. I have a great friend from college who is coming in on Saturday night to stay with me while Brad and the boys are gone.

A great promise from Psalm 34    The Lord is close to the brokenhearted. He saves those who are crushed in spirit.

In grace,

Laura

Day +32

I feel like I am on the road to recovery! There are no chemotherapy treatments looming in my immediate future, and I am basically resting at home to recover my strength and avoid infection. I only have to go to the outpatient clinic at St. Francis two time per week now. I had been going every day for over a month. (of course 10 days of this was hospitalization) It is still difficult to keep food and pills down,  but the doctor said that usually ends at about 6 weeks. I also have some different rashes they are treating. The doctors and nurses say that this is all normal. It is hard not to worry about every little ache and pain.

Every week until Day 100 I go in to get some anti-bodies by IV. It takes about two hours. This last Friday I had a bone marrow biopsy. It was a little painful since I have very hard bones, and my bone density level was way above normal. I told the nurse that I had never broken any bones before. She joked back that I probably never will. It was hard to walk on Friday and Saturday, but the pain seems to be subsiding now. I will get the results from the biopsy sometime this week. The doctor feels that it will be a positive outcome – all donor marrow, no Laura marrow.

Things I am enjoying doing:

Sitting on the front porch in the sun

Going grocery shopping with a friend in the middle of the day wearing a heavy mask I can hardly breathe through and getting many strange looks.

Cooking a meal for my family or cleaning up after a meal (I don’t have the strength to do both)

Our family going out for our traditional lunch at a Chinese restaurant on the last day of school

Enjoying visitors from out of town

Talking to people from The Oaks about the marvelous end of the school year

Spending time with friends who take me to my appointments or just stop over to talk.

Learning how to have hope

Love you all-

Laura