One Step Forwards — Two Steps Back

All of the sudden in the late afternoon I felt the feeling I have felt three times before and told Deborah I was having another seizure. I quickly told her I loved her and asked God to help me overcome this dreadful experience. But his will was that I go through the experience again, and all the will power I could muster did not stop it. Here’s the rest of the story….

List of events

  1. June 4, 2008 — Why do the seizures keep coming back
  2. June 6, 2008 — Can I afford to take time off from helping people
  3. June 10, 2008 — Being connected in a special way
  4. June 15, 2008 — Five months since my BMT
  5. June 17, 2008 — Being told I am Epileptic was difficult
  6. June 27, 2008 — Blessed to get the opportunity to work

  1. June 4, 2008 — Why do the seizures keep coming back
  2. I have been working diligently to get my fatigue under control and get back to a more routine lifestyle. Part of my goal was to begin working a few hours from home. After attempting to do this a couple of times I have felt overwhelmed and backed off.

    Last week, after talking with my medical team I decided to jump back in. I even told my colleges my goal to get back into the inner workings of our team. It seemed like a good week so Deborah and I focused on some small organizing projects around the house. I did just a tad of heavy lifting on Saturday evening and thought things were just dandy.

    Sunday, June 1, 2008 was a big day for us. It was our 35th wedding anniversary. We still haven’t felt comfortable going back to church so we stayed at home all day. All of the sudden in the late afternoon I felt the feeling I have felt three times before and told Deborah I was having another seizure. I quickly told her I loved her and asked God to help me overcome this dreadful experience. But his will was that I go through the experience again, and all the will power I could muster did not stop it.

    After the neighborhood got a showing of our emergency responders visiting the Sprague residence they loaded me up and hauled me to the Emergency Room. I was there quite a long time and finally saw a neurologist who gave me a total evaluation. In the end he believed it was a complex partial generalized seizure. They doubled my medication and after talking with my BMT doctor everyone agreed I could go home. I agreed I would rest better in my own bed.

    It is very unfortunate that some people get their feelings hurt when something like this happens. One of our family members in close proximity to the hospital attending church was called and asked to call Deborah before leaving church just in case she needed a ride home. Deborah always rides in the ambulance with me because they typically ask her questions during the ride from our house to the ER. And one other family member was called to go on standby as a backup. I feel so blessed that someone spoke up on our behalf at church and requested prayer for us during this time of uncertainty. But I wish it would have stopped there. Instead the grapevine got started and the calls started rolling in.

    Now it is important for people to know and understand that in the ER we really don’t know anything often for a very long time. This last time they were very busy so we ended up calling my BMT doctor to get me through the maze. There isn’t time to call everyone and there isn’t anything to tell at that point in time. The patient and caregiver must have a plan in place and execute it with precision. That’s exactly what Deborah and I do. If there must be any telephone calls I guess it would make sense to call us directly, but people choose not to do that. So the frustration begins, if not for the other people, it is for us, because we simply do not understand why people cannot keep their focus on good communications. The grapevine is not a good source for information. I think after several people had their feelings hurt I was able to communicate the facts to them. But if someone had just kept quiet for a few hours, and given things time to work out, it would have been much better.

    After our exciting weekend I have worked three partial days from home. I have also continued my exercise routine following the doctor’s orders to do about half of what I was before the seizure. And I have gotten out a little to see a few people the past couple of days. I am so blessed to be here, alive and well. Even my last blood tests and exam on Friday (5/30/08) indicate everything is going as expected. Today is day 162 post BMT and we are excited to be getting close to that big six month mark. The best part is I hear Emily and Lindsey are both doing well. I would ask that you keep all of us BMT patients in your prayers.

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  3. June 6, 2008 — Can I afford to take time off from helping people
  4. Things are going very well and I wanted to post an updated picture of me with hair. It is post transplant day 164 and before long Deborah is going to drag me in for a haircut. Yesterday, at our Bone Marrow Support Group meeting, one of the ladies said she wished she could grow some hair and that made me appreciate mine even that much more.

    I was very disappointed when they told us the BMT Support Group meetings are being suspended for the summer. It seems the same ones of us are there consistently, and a few people come and go as they can. But it is disappointing to me because I always look forward to the camaraderie and seeing the medical professionals that care for those of us going through this time in our lives.

    This settled into my mind, with a very somber thought, “I wish I could take the summer off and distance myself from the fact I am a BMT survivor.” Not to show any disrespect for the decision that was made. However, I look forward to seeing people who have, as they say, walked in the same moccasins. And part of my reasoning for agreeing to help Amy (the nurse that started this group for us) was to help other people. With this decision I will help people in a different way by focusing on writing an update to my story and working towards getting my book out into more people’s hands.

    Let me close by saying last night I found out another person Deborah and I knew lost her short battle with Mr. C this week. It was a reminder about how blessed I am. I covet your prayers for all the children that are left alone in this world without their parents influence to guide them into their young adult lives. And also please remember the splintered families where single moms are doing their best to direct their children in the right direction. It is difficult to understand how one misguided man or woman could cause so much havoc amongst the people in their lives as they move from one marriage to another. I feel blessed that God has protected me from making decisions that would have me in a situation like that. Only the grace of God has protected me from that plight. I promised one mother that she and her daughter would be in my prayers as this person leaves our presence and enters into eternity. Perhaps this reality will make a difference for many people and help them resolve the issues that keep them down. Lord God I pray for healing and mercy in these people’s lives during this time.

    Today is a beautiful day here in the heartland. It is 76 degrees and partly cloudy. The air is cool, but comfortable. The sun is wonderful and reminds me how much God loves me. I am very blessed to have family and friends stop by my CarePage and post notes. Don’t ever forget how much they mean to me and to Deborah. Don’t ever forget how special you are and that God loves you!

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  5. June 10, 2008 — Being connected in a special way
  6. I warned you a haircut was coming my way soon. Just after my last note I had a visit and our friend Mickie came in the front door with her bag ready to take on my head. Now I have clean shaven ears without things sticking up everywhere. Deborah is much happier. I guess I should be honest and tell you I kind of like my new short hairstyle.

    Today was my breathing treatment and Mary took extra good care of me. I had to go through the list of questions as normal then she placed the little tent over me and started the inhalation treatment of Pentamidine to prevent PCP pneumonia. It is my understanding this treatment is required for a minimum of six months post transplant.

    After my treatment was completed I had a long talk with Mary about things a BMT patient thinks about. It is always good for me to talk things out and make sure my perspective is in-line with the real world. As you might consider the topic was seizures and my expectations. We also discussed other things like the importance, in her opinion as a medical professional, of me keeping up my CarePage.

    I also drug Deborah through the clinic to say hi to everyone, and the resource center to say hi to Lynn. We got to have a good visit with a couple of the other people that take care of me there. And Lynn is always so encouraging to me. These people are all very special to me and it helps me to tell them thank you for the care they have given and continue to give me. I know some of my nurses take a peak here every now and then so if one of you is reading this “Thank you for doing what you do!” for me and all the other patients that you care for.

    Recently my mind seems to be focused on writing another book. And I have even found out I have some allies in the medical profession that think it is a good idea. My goal will be to enlighten people about the bone marrow transplant process. You may not realize it but each of us deals with this phenomenon in different ways. Some people want to get it over and move on with their lives never looking back. Other people want to stay connected to the medical community that saved their life. Yet other people search for ways to give back and help other folks that face this regimen. My goal is to find a healthy balance of these.

    In reality being a cancer survivor is part of a person’s life once they enter into that world. But like one story I read, it is difficult for some of us to understand if we want to be remembered for what we were before our diagnosis or as a cancer survivor. I think I will say that I pray people will remember me as a kind, loving, caring person that helped all the people I came into contact with.

    Professionally I have spent my career helping people with their information technology needs. In my private life I have served people by sharing my faith and doing things that I believe in for the good of everyone, family and friends. And in my marriage I have strived to be the best husband I could be for Deborah. I believe in love and in the principles God taught me through his son Jesus when he walked this earth. I have lived a life that purposefully aimed at reaching a higher mark and to show other people there is a benefit to doing so. At 55 plus years old, and nearly 13 years as a cancer patient, I must say I have been very blessed to see the results of living a life-style that is faithful to my belief system.

    My goal is to keep learning and writing my thoughts. I hope in some small way that makes a difference for many people that take the time to stop by SpraguesHope. Don’t ever forget how important you are and that God loves you.

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  7. June 15, 2008 — Five months since my BMT
  8. Today it has been five months since my transplant. Deborah and I have been on quite a roller coaster ride the past 18 months or so. But since plans feel through on the first for our wedding anniversary celebration we tacked on father’s day, and went for a three day celebration.

    I got treated to Olive Garden for super tonight and we enjoyed it very much. Actually, Deborah can prepare much better meals but we wanted to go out tonight so we did. Things in the food industry sure seem to have changed over the years and not for the better.

    For those who may be wondering about my status as a father I am. The only difference for me is I have never seen my child as we lost it to a miscarriage during our first year of marriage. It was followed by other medical complications so we appear to not care about children, but in reality I really love them. God just had other priorities for Deborah and me to pursue.

    Last week I worked from home a little and I still find that challenging. Over the weekend I helped my baby brother Dennis work on his new deck. I didn’t do much but I had fun getting out and helping him build something. And I participated in a American Cancer Society walk Friday evening, where we got to see several of our friends from KUMED. I wanted to encourage them in their efforts and thank everyone I met for their efforts.

    As you can see I am enjoying life and trying my best to get back into things a little. Next week I have a doctor’s appointment with my neurologist to follow-up on my seizures. We hope to get some encouraging news there. I’ll keep everyone as I get time and energy.

    Let me close by asking everyone to remember the people that are struggling with the BMT business. I have mentioned Lindsey and Emily. They both seem to be doing well, but it is a long journey to complete healing for them. There are several other people who haven’t given me permission to use their names but I would still like you to pray for them. And our doctors and nurses and the staff that supports all that need our prayers as well. What a wonderful group of people.

    Thank you for your continued support. Happy father’s day to all you daddy’s out there.

    P.S. Please remember my mother in your prayers as well. She is in the hospital for a few days and reports she is doing well. May get to come home Monday.

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  9. June 17, 2008 — Being told I am Epileptic was difficult
  10. Today I saw my neurologist at KUMED. The good news is my current dose of Keppra is staying the same. And I don’t have any addition tests required because of my last seizure. The doctor told me she is certain I am having seizures, but not because of any known reasons like a tumor in my brain. I learned a new term today that I didn’t understand, and I found it challenging.

    I was told the definition of Epilepsy and that my case meets the criteria for that definition. That was a bit difficult for me to understand because it seemed like there was more to that disease than that. I was also told I would probably stay on medication for it the rest of my life. To come off it would require a lengthy period of time without a seizure then more or less an experiment to see if I could discontinue the medication. It could end up causing a relapse to having them again and it probably isn’t worth that.

    The exact type of seizure I have is complex partial generalized seizures not the grand mal seizures as thought originally. This is supposed to be a good thing (I guess).

    My lifestyle now has a lot more rules to follow, like no getting on the roof anymore. I can’t stand on a ladder or use power tools or cook or take a bath. The most troubling one on the list is no driving for six months which started over June 1. I was over half way there but the time started over when I had my last seizure.

    Don’t take anything for granted because you may be like me and lose it. It will really hurt. I so much want to climb into my little sports car and drive off to the country like I used to do just to get out of the city. It’s a freedom that can only be realized being behind the wheel and controlling that vehicle. In my truck driving days I remember a country song about the driver of an 18 wheeler’s steady hand pulling that load behind. And I used to do that too, but no longer!

    Let me close this note by saying I am grateful that I have wonderful doctors and nurses caring for me. My neurologist will see me again in 90 days. And I am grateful that there is hope that one day, in not that distant future, I will be able to drive again. But the thing I know for sure is God has a plan for my life and he is in control. I am also blessed to have a wonderful supportive wife that does her best to support me and take care of all my needs. We will make it through this adjustment (I think I have driven two times since the first of November, 2007).

    I almost forgot to mention Emily is having a few bumps in the road right now. Please keep her and her family in your prayers. And my mother actually got to come home from the hospital last night and said she is doing well.

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  11. June 27, 2008 — Blessed to get the opportunity to work
  12. It’s Friday!

    Thank you to everyone that took a minute to encourage me after my last post. As some of you picked up on I was very uneasy about hearing the word Epilepsy and that most likely I will remain on the Keppra anti-seizure medication for the rest of my life. It was nice to get the notes of encouragement – thank you!

    I think the best medicine for me the past week has been getting to spend time with my family. Over the weekend I stopped by my baby brother’s house to help him with some work he is doing on a new deck and privacy fence. I am very limited in the amount of time and what I can do to help, but it is neat that I can do anything like that. I got to see both my brothers last Saturday for a while and that was great.

    It was also nice to see my mother this week after she got home from the hospital. I think she is doing much better and enjoyed our short visit.

    I keep in close touch with my uncle and aunt and they offer Deborah and me so much support. Thank you!

    Perhaps the most exciting news I can share is I worked several days this week. Now keep in mind I don’t have to get up, get dressed, commute downtown, park and walk into the office. All I do is walk into my office where I work in my home right now, but that is a challenge for me. I nearly completed four full days, which is a bit aggressive at this point in time. I am testing the waters to see how I do.

    Of course we still visit the gym about six days a week to keep working at building up my stamina. I spent some time with a personal trainer and learned some new tricks to help me tone up my weakened muscles and I have been adding that to my routine. It is taking me a while to get used to the new routine and I think it is helping a lot.

    On the most important front are my BMT friends. We heard one of the ladies we know that had been having problems was finally able to harvest her stem cells. I heard from Emily that she is doing better (still some bumps in the road but she is improving). And Lindsey an update that shows her progressing as well (also has a few bumps in the road to deal with). And there are a couple of other people I have become close to that are also doing well. You know what that really helps me see the blessings in life. Just think, if I hadn’t had a BMT I wouldn’t have these new people in my life. I feel so blessed to have them all as friends now. My plans are to keep working at getting back to a normal routine. It is going to take some time, but I think my doctors and nurses have invested so much in my life that I need to give it all I have. Our goal is always a complete cure and getting back to as normal of life as possible. While God has the ultimate control over this I am still responsible to do my best.

    Please continue to pray for all the people that have illness to deal with and for the medical teams that care for us. And remember, that no one knows when they too will join those of us who deal with illness, so take care of yourselves!

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