Updates - Counts and Hair

My weekly appointment today was fairly uneventful. My counts are holding steady on the very low side of normal. For those interested: White 4.7, Red (Hemoglobin) 10.2, Plates 91. Last week the doctor checked my spleen and liver. He said that he couldn’t feel them and that was good news. Apparently you are not supposed to be able to feel them. He also said that I look great. That’s always encouraging to hear. They are starting to lower the dose of Prograf that I am getting. This is the anti-rejection drug that keeps my body from rejecting the marrow and the marrow from rejecting my body. I asked what horrible thing I can expect to happen as I am taken off of this. He did laugh, but said that they will just keep monitoring for graft vs. host disease - skin rashes, wacky liver enzymes, and unpleasant digestive tract symptoms. We shall see.

I asked about my hair today. Before the transplant, I had started to grow back a little bit of hair (just enough to notice that it was coming back in). It is getting close to three months (Day +83 today), and there is no sign of any hair. I haven’t gotten to the point where I mind this yet. I appreciate not having to dry and style it, but I still scare little kids when I am out in public. The doctor reminded me that Busulfan (the chemo I had before transplant) is VERY hard on hair. I should not expect to see any until 4 - 6 months after treatment. At least that gives me a time line. A friend who is a wonderful artist has been doing art with hair recently. She cut my hair off when I was first diagnosed and kept some. She recently gave me a beautifully framed piece that she made using my hair. It is wonderful.

I feel very good and much of my energy is returning. I am trying to work as much as I can without overdoing it. It is truly a miracle that I have gotten as far as I have, but I constantly have to battle to live in the moment and not worry about the future. I am going to enjoy my family and my friends and job and life while I can.

Laura

Okay, okay!

All right, I guess it’s time for me to answer a question.  Several people have asked where that hole came from that Laura fell in.  There were two different times that a huge tree we had in the back yard lost a limb.  Now the size of one of these limbs was the size of some trees.  It was HUGE!!!  When it fell it covered the entire yard and smashed up our fence.  The end of it hit the ground and dug this hole.  It didn’t start out as big as it is now. I think I finally realized this year just how big it was becoming.  Part of the reason is I believe there is an animal that has decided to use that as an entrance to its lair.  Fairly good size animal at that.

Now for the clincher: Yes, I am that lazy that I would not fill the hole up.  I’m not one to keep up very well on taking care of certain matters around the house, mostly the yard.  I hate yard work and would rather shove bamboo up my fingernails so I tend to ignore projects in the yard.  If no one falls in the hole, no need to fill it in.  Enters Laura.  After her fall, I’m forced to address this issue.  After the gasps from people regarding the hole, it puts even more emphasis on the need to address this issue.  No fear, the hole will be taken care of soon.  Now I have to decide whether she tripped on purpose to get me to fill in the hole or whether it was REALLY an accident.  The mystery remains unsolved.

Brad

Where Did that Hole Come From?

I haven’t been in the great outdoors very much for the past 9 months. Even now that I am feeling better, I have been slow to hang out for very long in the sun. I have to slather myself with 50 spf sunscreen to avoid triggering graft versus host disease and skin cancer. (I am prone to both of these for the rest of my earthly life, due to the transplant.) I really don’t think I have been in our backyard more than 3 times since December.

Imagine my surprise today when I discovered a fairly large hole in our backyard! I discovered this hole by falling in it as I went outside to tell Noah something. It was not a graceful fall! Both of my ankles buckled as I fell in, and I put out my hands to catch myself, scraping both of my palms. My shin hit the side of the hole, promptly swelling up and turning black and blue. If I had seen someone else do this, I probably would have laughed. I know it was a funny sight.

I had been so careful when I first had my transplant to watch every step, hold onto railings, and look where I was going. Apparently, when your platelets are at 7000 one tends to be much more careful than when they are at 94000. After propping my leg up and plopping a bag of frozen vegetables on my shin, I called the bone marrow clinic to make sure I was not going to bleed out. The nurse said that if the cuts on my palm were clotting, they could just look at me during my regular appointment tomorrow. The cuts had barely oozed, so I am safe for now. I know the nurses are really going to have fun with this one tomorrow.

Laura

Day +69

I have been feeling really well this week. My cold seems to be going away, slowly but surely. I didn’t report on the results of my doctor appointment last Tuesday, so I will try to include some details from last week and this week.

Last week they took many vials of blood from me to do extra testing at the Day +60 mark. I received the results of my blood counts that day (Whites - 4.7, Reds - 10.1 and Plates. - 114: all good), but the rest of the results took longer to be returned.

As I was talking to the doctor last week, he said, “So how’s your workout going?” The crazy look I gave him was the result of barely knowing the meaning of the word workout! After recovering sufficiently, I said, “Well, I was thinking about doing 10 minutes each day on the treadmill. What do you think?” His response was, “How about 30? Ten minutes 3 times per day.” Oohhhh.

The nurse told me that because of the long holiday weekend, the clinic would not call me with the results until Monday. Monday came and went, and while I didn’t sit by the phone, the idea did cross my mind that they wanted to tell me the bad news in person instead of calling.

Today my counts were still good (White - 4.6, Reds - 10.4, Plates. a little lower - 94) and the doctor couldn’t find anything wrong with me. “How are my kidneys, doctor?” “Much better!” “How is my liver?” (Liver damage is often a side effect of treatment.) “Your liver is great!”

Most interesting thing the doctor said today: “You really need to push yourself a little bit more, past what you think you can do.” He indicated that this will enable me to go back to work in the fall.

Best news I received today: After expressing my concerns about not receiving test results and tossing out the theory that he was holding the bad news to tell me in person, the doctor said that he hadn’t seen any test results, and that I was correct in assuming bad news would be delivered in person. The results weren’t back, but he would call me later in the day. While I was finishing up my IV treatment, the doctor and nurse came in with the good news. My results show that all of my marrow and blood are from the donor! The bone marrow transplant is taking, and I am doing as well as anybody can. There were of course the obligatory jokes about being male now since my donor is male. I also have a different blood type now.

Thanks to all of you who have been praying for this whole process. It seems like a miracle to me that everything is going so well. I have tried to stay positive through the whole ordeal, but sometimes it was hard to hope. I am continuing to learn to trust God more with my future, knowing that no one is promised tomorrow.

You may see me out and about as I try to “push myself a little more.” Day +100 might even find me in a crowded room!

Love,

Laura

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