Saturday, January 30, 2010

Why Does Faith Differ?

I do not normally quote The Message. It is easy to read but it is still someone's interpretation and not a translation. But with that caveat, here is Hebrews 11:1 "The fundamental fact of existence is that this trust in God, this faith, is the firm foundation under everything that makes life worth living. It's our handle on what we can't see." The writer of Hebrews goes into a long list of "The Hall of Faith" of people who faced monumental and pivotal circumstances by faith. Situations that were larger than they could handle or imagine.

Would it surprise you that I struggle with faith? For those of you who really know me, that was a "duh" statement. Certainly we are sitting in an unanticipated journey in life. The psychologist connected with the Hematology Unit mentioned that people often struggle in many areas of life when faced with a significant illness and treatment. Killing off your bone marrow and having to develop a brand new immune system is certainly no small step. And to be told that this is not a cure, the cancer is expected to come back makes it even more significant. Is this bigger than we can handle or fully comprehend? You betcha!

We have little problem responding to this challenge with faith. A local physician remarked how surprised he was by Lucy's relaxed and calm demeanor on the day before her hospital admission. He understood what was before her. And, I suppose so did we. But God has cared for us so well for so long that the thought of His lack of, or inattention to care would be our experience. Certainly the process was unknown, but the Great Physician was not. Also, this illness was bigger and more complex than we could control. In essence it is easy to have faith in that situation.

Where I struggle is in the little things. Things where I could or feel I should be in control. Situations where I do have some competency. Things that seem much less monumental. It is easy to have faith in the things I cannot handle. But to have faith in things where I know I have competency, is such a greater challenge.

Today I sit in that situation. Faith that God will be glorified in and through Lucy's illness is not hard. That is a slam dunk prayer. Asking for God to get the glory is exactly what He wants. Not hard at all to live in faith there.

But this other is such a struggle. It is harder to have faith and to trust in the things unseen here. It is hard for me to grasp this handle of the unseen. Faith maybe should not differ. But I'm finding it does.

It hurts to struggle. It feels like failure when the faith does not naturally flow. Maybe faith should not differ, but in my experience it does. Certainly I would never be included in the Great Hall of Faith based upon my current response. It just does not cut it. Faith may not differ but certainly my reliance and implementation of it does. Will faith ever get to the point where it is not a struggle? I hope so, but fear not.

Friday, January 29, 2010

Tick Marks on the Wall

You remember seeing the movies where someone enters a prison cell to find a series of "tick marks" (usually in bundles of five) on the wall. Sometimes I thought it might have been the prisoner's way of keeping track of the days until he or she was released. I think I am discovering that it was a way to keep from becoming confused or disconnected.

Memory is a tricky thing. Certainly it can be trained and improved, but natural memory is interesting. It never ceases to amaze me what "sticks" in a person's memory and what does not. Years ago, Lucy's mother worked with a special needs Sunday School class in El Paso. I still remember one young lady from the class. Every time we met she could tell me all the significant dates in my life (birthday, anniversary, etc). She was told once and they stuck.

I make it a habit of not remembering things that I can access in other ways. I remember our home telephone number here (because I call it) but do not remember my GSM/Mobile Phone number because I never call myself. I talk to myself a lot but never have to use the phone. If I need to know my GSM number I know where to look it up. I remember faces but have to force myself to remember names. Lucy and Megan think my head is full of trivia because of the things I do remember. Ha Ha, fooled them, my head is so empty that thoughts accelerate as they enter and leave faster than arriving.

What I could do was always remember what needed to be done on what date. As a strategic thinker, I could think in process and have a mental flow chart of what needed to be done when and next. For the most part, the monthly and yearly calendar ahead was fixed in my mind. It was just there. I did not have to force it in, I just saw it in my mind. I remembered which balls I had thrown in the air and in what order. It was a kind of strategic juggling.

But now I find myself locked in the prison of sameness. Life seems so much about dealing with the now that the future is a blur. I think I need some form of mental tick marks to keep track of process and progress. For strategic thinkers only living in the now is frightening, confusing, aggravating and produces a feeling of being disconnected with the world and reality as you normally see and perceive it. I need some tick marks to remind me where I am. But are there tick marks to remind you what you need to do next? Strategic thinkers never need them, they are just wired into our brains.

When I was young I never needed to be disciplined to exercise. I played sports and worked in physical jobs so I was in good shape without the discipline. I did not have to plan an exercise program, life provided it. Now I have to plan to do my running and make an effort to do that. It is not built in and certainly not a natural desire. I have to actively stuff it into my mind.

For now my greatest need, desire and point of discomfort is there is no natural sense of process and what needs to be done. I do not remember if I have thrown balls into the air, I do not naturally remember what needs to be done next week or next month. So if you see me going around confused it is because I have not found a way to do my mental tick marks.

We have to balance Jesus' advice to not have concern about tomorrow with His admonition to count the cost. The ways that worked in the past are not effective or available now. How do you scribe tick marks in the mind?

Random thoughts. If you have an other evaluation, you may be correct as well.

Thursday, January 28, 2010

Now that we are home

When the doctor came in to ask what we thought about going home, we had already talked about it. Fortunately we had that option. In talking with the husband of the patient on the other end of the hall, they will not have the opportunity to have that conversation with the doctor. He said they only have a few months. How do you give hope to someone who thinks this is all there is to life? All I could give as hope was that the doctors do not know everything but God does. We trust Him.

"Are you ready to go home" is sort of like being asked "Are you allergic to anything?" The doctor is expecting an answer. The typical answer to "Are you allergic to anything" is either yes or no. My answer is "not anything I have had so far but I don't have a clue about what you are about to give me since I have never had it before." Probably not what they want to hear, but how the heck do I know, I'm not omniscient like God.

So "are you ready to go home" has permutations that we do not expect. "Are you ready to not have to be in the hospital?" is easy to answer. "Are you ready not to have to make the daily pilgrimage to this place?" is also a no-brainer. "Are you glad this process is over and you are beginning to feel better?" should be self-evident. "Are you glad to not have to drag an IV pole with you wherever you go?" means she would have to leave her "buddy" behind. Sorry buddy.

But how can you be ready for something you have never done before? I know I am not the natural care-giver type. Some people have that instinct and others have that training. I have neither. Lucy and I handle illness and recovery differently. She likes the attention and having her pillows fluffed. I am like a dog who goes into the corner and hides until I get better. Let me ask you, "Do YOU want someone like me for your care-giver?" And, by the way, what does being a care-giver for someone recovering from a bone marrow re-infusion entail? Not like I have done that a lot in my past, so I have asked for advice.

The advice I got is like a lot of advice you get. Everyone has an opinion and they all  . . . are different. (I know what you are thinking). God broke the mold after each of us; there are no two alike. So how I do it is different than anyone else. How Lucy recovers is different than anyone else. We both shared our concerns with each other and seemed not overwhelmed by them so we took the opportunity to be (off let) or discharged. It may have been more like escape.

She is out of the hospital but not instantly better. It's not like walking through the front door magically fixes everything. She is still recovering from having her bone marrow intentionally and aggressively destroyed and cells designed to rebuild it re-infused so the process can begin. It is not like microwave recovery.

When you are not a natural or trained caregiver, being the primary caregiver for a person recovering from this process seems sometimes overwhelming. I know it is frustrating for me and can only imagine how frustrating it is for Lucy. PLUS she is the sick one.

So how am I doing? Megan has been praying no one dies. She has been praying that her mama will not die under my care and that her mama will not kill her father while he is the primary caregiver. So far, her prayers have been answered. God always answers prayer.

Personally this is one experience I could have done without. Will it make me a better person? Not my concern right now. Will Lucy survive it? A concern, but there is more than this life and the one after is so much better. Is this a great adventure that we share together? We are sharing it. Is God getting the glory through this? Man you ask hard questions. A hurricane looks so different from the approach, being in the eye and going away. Can't tell you where we are on that timeline. And where we are is not as important as how and who we are on it.

That's why this blog is called random thoughts.

Sunday, January 10, 2010

Knowing something and KNOWING something

From years of ministry to those in hospitals and with chronic illnesses, I know there are good days and bad days in the healing process.

Today was one of the not so good days. I attended one of our partner churches and went to lunch with friends after the service. I had called Lucy in the morning and she knew I was going and going to be late getting to the hospital. She said she was feeling ok when I called her.

When I got there, she was not feeling good. Not feeling really bad, just not good. I know there will be days like this but experiencing them is something different. We have super nurses and her doctor is the head of the department and very committed to the care and the well-being of his patients. About the only thing he does not understand is that Americans (certainly these Americans) do not keep their homes as warm as most Flemish. But he does care.

I was working on the computer when he made rounds. He saw Lucy's computer on the bedside table and said it looked uncomfortable. He offered to find a desk for the room. Hey, I am not even the patient.

But with all that, Lucy was still not feeling well and we could not fix it. I know these days will come, but experiencing them is not a knowledge I enjoy.

Lucy and I make a good team. She is often the faith person and I am the works person. Between the two of us we find significant and effective ways to demonstrate what faith can to in a persons life. I have faith in God and the health-care professionals here. It's just that it feels like there should be something I can do to actualize that faith.

But I know God will care for us and am learning on how to KNOW that better.

Saturday, January 9, 2010

Caring Bridge

For a while I will be doing the updates on Caring Bridge. You can go there to check the latest.

Friday, January 8, 2010

What Can You Say?

Blogging is not my thing. I think thoughts and seldom write them out. Usually my written stuff ends up being a sermon. Not a message aimed at anyone else, more like sharing with others what God is doing in rattling my chain.

Yesterday was a typical (for now) strange day. Just after 8:00AM the intercom rang. It was the TaxiPost with a package. The trainee did not say much and the supervisor asked if I could come down there and get it. Most delivery people will come to the 6th floor. "No problem," I said, "I'll be right down." (Or at least that's the way you would say in in English)

At that time of the day the elevator is busy. Lately it has been having problems and is slow. You must understand it is only slightly larger than a telephone booth so rarely does it stop on another floor. So I waited. When it finally did arrive and the doors slooooowly opened, out stepped our neighbor. He had been down to get his morning paper. Of course he was asking about Lucy and how it has been going with her treatment. He is getting older and I still have an accent so the conversation is sometimes a little slow. At the end he said, "They are waiting downstairs with a package for you." Imagine that!

Went downstairs and got the package from Lucy's sisters. Always a surprise to open that. No one packs a box like they do. I sorted out the stuff to take to Lucy, finished the morning chores and headed for the hospital. Decided to walk up the hill to catch the bus since it had snowed and the walk would be nice. It has not been above freezing here for almost two weeks and they are running out of road salt. Snow makes it much easier to navigate.

Visiting hours begin late here, 2:30PM, and go until 8:00PM. The nurses on the transplant unit don't seem to mind my sneaking in early. The nurses on the unit through which you have to go to GET to the transplant unit are another story. Often there is a staring match with ugly looks. I usually win since I am not getting prettier with age.

Lucy was tired and nauseous so I let her rest. I took a call from a colleague checking on us. A pastor friend called and asked if he could come for a visit. Plus we had two colleagues coming to "replace" me so I could go to the oral surgeon. When it was time for them to arrive (still a little before visiting hours) I slipped out to meet them. Told the nurses in the unit I was meeting my replacements so the visitors would not have to ring the bell and disturb the nurses. They reminded me that is what they are paid to do, and I told them they had more important stuff than being our receptionists. The nurses I have met are really great people who care about the comfort and well being of the patients. We are building a bond and chatting about really important stuff. You know what I mean.

After the replacements arrived I took the bus to the other hospital to see the oral surgeon. One colleague had asked who was driving me home. I told him it would be one of my chauffeurs from De Lijn (Tram and Bus Company). We seldom drive in the city center.

Got to the hospital (actually slipped and slide) through the icy sidewalks and alleys. When I checked in at the desk it was the usual challenge of explaining why we do not have Belgian health insurance. At least he got the idea and we got the rest of the info into the computer. He printed out my "plakketjes" or stickers and gave me directions to the clinic. He added a handwritten note that said I had to pay immediately. No insurance, it is cash only. We do have American health insurance but they do not accept it here so we pay and are reimbursed.

When you get to the surgery area the sign says, 1) Check in at the front desk; 2) Find a seat; 3) The nurse will come get you. One and two were done so I waited on number three. Just before my appointment a woman in scrubs came out of the treatment room and said hello and headed down the hall. A little later, the nurse came and got me. She said the doctor would be right back that she had to go to . . . (you can fill in the blanks)

The oral surgeon discussed what she needed to do and all of the risks involved. Possible risks explained in your second language seem bigger sometimes, especially when she mentioned some might last for 6 months! She said since I did not have insurance was I ready to pay the entire bill. I asked her how much it would be and then told her I thought I could cover that. Not inexpensive but definitely cheaper than in America.

Before she got started she asked if I spoke English (Duh what tipped her off?!). I told her we could do this in either language but that I might make more sense in English when she had her hands in my mouth. She said she would do her best. Actually her English is probably as good as my Flemish. That is according to her. She said she only has one other English speaking patient that speaks better Flemish than me and he has been here almost three times as long as us. She was very complementary. I was flattered and asked if she thought all of this would go that well.

NO. She said she was expecting problems since this was not going to be very easy. (At the end she told me that if she had seen me early in her career she would have budgeted 4 hours for the procedure) Fortunately she has many years of experience even though she is younger than me. I can say she was right, it was not painful per say. However it was pretty uncomfortable. But there were a few times when she was leaning everything she had into it and I was wondering if I was going to be pushed through the chair. Finally she said we just need to cut and drill this out. Then the real fun began!

When she was done, the proudly showed me the pieces and we wrapped up the work. It was decided that she would print a bill and I could transfer the funds online. Not bad since my regular dentist is a cash (and cash only) on treatment guy. I asked the surgeon about giving me something for pain. They had given me a pain pill before they started. I told her I had a high pain threshold but once the pain went over that, over the counter stuff did not touch it. She gave me a prescription for basically some stronger over the counter stuff. As Lucy would say it is spit. She is sometimes colorful when it comes to pain meds. They really do not believe in strong pain meds here. The Flemish just tell you to "Bite your teeth". That was going to be harder since I was one short.

I missed a couple of buses on the way back and had to walk part of the way. Got to our pharmacist before she closed and asked about her new baby. She asked about Lucy. I asked if she had a picture of the new baby, she did not ask for a picture of Lucy.

Got home and did all the things the doctor told me to do. I was thinking she might be right that my face could be numb for months, but it is not. Pain is under control but certainly there. Hopefully the hole she sewed up will quit leaking and the "spit" pain meds will keep things bearable.

The regular postman brought a package while I was at the hospital so I have to wait until the post opens this morning to get it. It must be Christmas since this is two packages in a row without duty and tax on it. Most of the time we have to pay the ransom before they will release them.

I will bend the visiting hour rules again (more ugly stares) since today is stem cell re-infusion day. They are expecting it just after noon (or when the cells get here from the blood bank). Just after noon here is just after 6:00AM Eastern time.

I am praying for a minimal reaction (they are her own cells) but people can and do react to the preservative so the nurse has to be at the bedside during the entire procedure. Our regular day nurse is off today so we will see who we get. I am banking on the fact that they are all good, kind, caring and understanding. If not, I'm in trouble.

For all who are asking what you can do, the answer is still pray. Pray for God to get the honor and glory, and for us to stay on His plan and not ours. Pray for more opportunities to be salt and light and to be able to live an example of an exchanged and transformed life before people who have never seen one. If that is the opportunity we get, all this will be worth it.

Stay tuned for the next episode.

Wednesday, January 6, 2010

It's Here!

We were planning on Lucy receiving the chemo on Thursday morning, me having a wisdom tooth removed on Thursday afternoon and the the stem cell re-infusion on Friday afternoon/evening. But things do change since medicine is still an art and not a science.

Lucy has been receiving medicine to help protect her body against some of the nastier side effects of the chemo. She was to receive three doses, one per day. After two days, she is showing the benefits (plus some less than common side effects) of this treatment. Due to her current condition, the doctor decided against the third preventative treatment and to do the chemo today, Wednesday.

This does have some advantage in that there is a longer delay between the chemo and the re-infusion so there will be less risk to the new stem cells. Once again they will give her some supplemental treatments with the stem cells to help reduce and minimize the time when she will be at the biggest risk due to no active immune system.

So Friday is stem cell day. We will get to know the medical staff even better on that day.

Saturday is the beginning of strict isolation. It means Lucy can no longer leave her room (even to go into the anteroom). It also means more people will be looking at her through the glass walls, more gowns and gloves and a different diet.

So far she is being a trooper even with the discomfort of the preventative treatment. As I write this, the chemo is in and the lines have been flushed. The nurse came in to say it is done.

Lucy is trying to sleep and not deal with the discomfort. This is good for her and for her care giver who is not the best nurse.

God is good. I was going to have to bend the rules REALLY FAR to be here tomorrow morning for the chemo treatment. But God planned it for today so I did not have to bend the rules (this time) and Lucy will get a rest day from treatment before the re-infusion.

Thanks for all who are praying and asking what you can do. For now, prayer is the biggest need we have.

Some have been asking about visits. As soon as we see how she responds to the re-infusion, we will let you know when you can visit. The hospital network blocks the port that the Magic Jack uses so that is not an option for us. We can Skype and Lucy gets email and can make/receive calls on her mobile phone. It will be better to check with us before trying to come. If she is up to it and able, she will be glad to see you and get a call. After all, she is the people person of the pair.

Thanks too for understanding priorities. Our first priority is to maintain our relationship with God. Our second is the relationship God gave Lucy and I that was sealed 14 June 1974. Megan is a part of that priority and responsibility.

After that we are committed to continuing to be a part of what God is doing here. So ministry is never far from our minds. Family, sleeping and eating come in there somewhere next and then there is . . .

Thanks for being a part of the journey. We are just regular people trying to do what God calls all of us to do, trust Him and tell His story where you are planted.