2008-March

March Updates

I continued to navigate the many changes I experienced after the Bone Marrow Transplant.

  1. March 5, 2008 — Getting more hair
  2. March 11, 2008 — Test results show additional improvement
  3. March 12, 2008 — Finally a mustache and facial hair
  4. March 18, 2008 — Time to shave or not
  5. March 20, 2008 — Start low and go slow
  6. March 26, 2008 — Recovering with ups and downs

  1. March 5, 2008 — Getting more hair
  2. Today is day + 50 since my BMT.

    It sure is nice to see that number growing and getting closer to the time I get my next round of tests run. Unless you are a cancer patient you probably cannot even imagine how precious getting CAT and Pet scan results are to us. Hearing that you are in complete remission really boosts a cancer patients morale. And that is what I am praying for.

    With Deborah’s new schedule at work I was very blessed to have her home with me last Thursday through Sunday. And the best part was our weather warmed up for the weekend. That gave us an opportunity to get out in a little more comfort (without all the layers of clothes and/or heavy coat I typically need to wear). We took several short drives to get me out of the house. And we also got to the gym to exercise on our regular schedule which helps me a lot. All that wore me out, but I had fun.

    I am still very limited in my activity because of the flu bug that is going around. Last night Deborah talked to one of our friends and learned that she got the flu last weekend. Then her husband also got it taking care of her. And she said it wasn’t pleasant at all. My instructions from the people taking care of me are to stay away from people and the germs out there so my body can continue to heal. So it looks like riding in the car is going to be my entertainment for a while longer. I’m just glad I can do that!

    My last doctor’s appointment was yesterday. I was thoroughly checked out by my nurse practitioner (Julie) and given a good report. The blood test results came back again where they are supposed to be at this point in time. I was just told to drink more water. They tell me we all need to drink between 60 and 80 ounces of water per day. And I do my best to hit around 64 ounces, but I need to increase that so I am going to make a conscious effort to accomplish that goal. The good news I got was sweetened a little more because while I still have to get weekly blood tests my next appointment is four weeks out. I feel very blessed that I am finally making progress in that area.

    I have more exciting news that may seem trivial to you, but it is sort of exciting to me. I started to see signs of hair growing several weeks back. It probably is best described more like peach fuzz than hair. This past week I have noticed, when I am in front of a mirror with the light shining just right, that it is starting to thicken a little (primarily on my head). My face is actually starting to fill in now too, and it won’t be long before I need to shave. If I look closely I can see hair showing up on the rest of my body as well. I take this as a sign of healing and a blessing. It is pretty exciting for me.

    Let me close by saying thank you again to everyone that contributes to my wellbeing and healing. First, there are a lot of you that follow my story and post notes to encourage me on a regular basis. That is very much appreciated. Second, many people at work donated leave to me. And right now I am using that to recuperate so I can go back to work when I get enough energy. Third, I have a wonderful medical team that takes excellent care of me. I hope I tell each of you thank you often enough for the care you have given me over the years, and continue to give me today. Forth, my beautiful bride has unselfishly done everything required to care for me for all these years. I wouldn’t be here without her help. It has also been wonderful to have my Uncle Gary’s help the past several months and I am thankful to him.

    Finally, and most importantly, are all the people that pray for me and my wife on a regular basis. As you probably know by now I give God all the glory for the years he has given me as a long-term cancer survivor. It is because many people’s prayers have been answered that I am here writing this right now. To God be the glory great things he has done. Thank you all for being part of my team!


    «Top of Page» «List of Events»


  3. March 11, 2008 — Test results show additional improvement
  4. I have had an excellent week since posting my last update. Today is day + 56 since my BMT and my weekly blood test results showed additional improvement. My nurse (Carrie) used that report to encourage me and cheer me on.

    My visit to the cancer center didn’t start out all that wonderful because I got stuck waiting for nearly one-half hour. Then, after they checked me in and got my vitals, I was placed in a waiting mode again for about 20 minutes. I decided to take a little walk and see if I couldn’t get my blood drawn since that’s all I was there for. I left Deborah in the room just in case someone came looking for me.

    The errand I went on was going one floor down where I found my nurse practitioner (Julie) and asked her how long I should wait for my test to be drawn. In her wonderful sense of humor the first thing she asked me was what I was doing there (she knew I wasn’t on the schedule to see her today). The next thing she asked was where her box of chocolates was. I had to give her a hard time about sending me to the third floor treatment area for a test. The test, of course, was whether or not I could take the stress of being put in a room and left there for a long wait. You have to understand I am on medication for anxiety right now and she is the one that put me on it. We had a good laugh, and then Carrie took me to a room and drew my blood tests.

    In case you think I forgot, I made an agreement with Carrie that I could leave to go get Deborah and bring her downstairs to wait with me. And of course let the other nurses that were expecting to take care of me know there was a slight change in plans. I need to mention one of the nurses had to leave, which left them shorthanded and they were doing the best they could to handle the patients. All I did was ask for help to get my test run and get the results back in time to get my instructions. Oh, when I got back upstairs there were a couple of people waiting on me apologizing for the long wait.

    The good news about my counts improving means I will be adjusting my dose of Acyclovir back up to its original amount. And I can tell my energy levels seem to be improving, which is consistent with the blood test results. My nurse (Carrie) told me to keep at the exercise and even add to what I am doing slowly to help build my stamina back up. I had already started that by doing an extra day yesterday. The only problem I seem to have is the mental one of dealing with all this lengthy recovery process and being so limited.

    I want to make sure everyone that reads this knows I feel incredibly blessed. This journey has been scary and I have learned a lot of new things. A bone marrow transplant is not a fun thing you should run out and sign up for tomorrow. That is unless it would save your life like it does many of us every year. But it takes a toll and takes time to recover from. And having a supportive medical team is the only way you can do it. I have the best of the best medical teams!

    My most difficult challenge is dealing with the mental part of this. And they tell me that was complicated by the three grand mal seizures I had. It is incredibly difficult to think about them and what they did to me. There are also limitations now, like taking longer to rebuild my energy and stamina, and not being able to drive for several months, that are a result of them. But I am working through all that and getting the support I need along the way. Like I said, I feel incredibly blessed and look forward to making the next hurdle. My 100 days are just about finished and the medication I am on is helping me overcome the challenges. God has blessed me more than I could ever ask so please don’t forget to say a prayer of thanks for those blessings.


    «Top of Page» «List of Events»


  5. March 12, 2008 — Finally a mustache and facial hair
  6. I finally decided that I have enough of a mustache and facial hair that it will show up in a photograph. If you look real close you can also see the fuzz on top of my head. In the mirror, when I gaze at myself, I see sort of a shadow effect on my head.

    Thanks to Deborah I get to share that photo with you today. Actually, there are two. You can see the first one on my CarePage for all to see when they stop by for a visit. And the second one is in the Photo Gallery to show how skinny I am at 179 pounds.

    The reason I wanted to get these photos taken was to show that my body is healing. Now that I have baby hair growing, and my blood counts are up, I have decided to start shaving again effective this afternoon. No more hair on my face to drive me crazy while I wear my trusty little mask all the time.

    I am very blessed that today is day + 57 since my BMT. While I am still fighting to regain my concentration, and I’m also trying to pace myself while I work on some of my goals around home to get me back into my life, I am thrilled to be where I am at today.

    Let me close by asking you to pray for three of my new friends. First, for Lindsey, who had to be hospitalized for complications to her BMT and will be there for approximately two weeks. I have mentioned her before. Second, for a young lady I met at our BMT Support Group meeting last week who is starting her transplant next week. Third, for another friend who just lost her Aunt. I don’t have permission to use the last two ladies names but God knows who they are.

    Finally, thank you to everyone that keeps Deborah and me in your prayers and keeps the encouragement coming our way. You are very special people and we both really appreciate you!


    «Top of Page» «List of Events»


  7. March 18, 2008 — Time to shave or not
  8. Do you remember me telling you last time that I had finally decided to shave off the hair that was just getting started growing on my face? Well the nurses at the cancer center didn’t think that was all that great of an idea today when I told them about it.

    Mary explained that the baby hair that is growing very slow right now can have problems if it is cut too short. She used a long word to describe it, but I cannot remember what she called it. And the possibility of cutting my face isn’t a good thing either. So I guess I’ll grow a beard or the other option I was given is to purchase an electric razor (I never liked them so that probably won’t happen). Or maybe I’ll just be real careful and shave every couple of weeks or so.

    You might be interested to hear that the fuzz on top of my head is starting to grow a bit more now. And the shadow I mentioned is getting darker. Perhaps in a week or so I’ll get an updated photo so you can see what things look like.

    I am very blessed that today is day + 63 since my BMT. My blood tests today came back where they are expected to be at this point in time. And the breathing treatment went very well. The only problem I had today was freezing while I took the breathing treatment. I am put inside a tent contraption that filters the air. And I drink sips of ice water to keep the taste of the medication from driving me crazy. Today I sipped about four glasses of ice water down during the approximately thirty minutes I was in the little tent (what Mary B. calls the bubble). Needless to say I got out chilled and started trembling a bit until I moved around and got my blood flowing again.

    There was another exciting event today. I had a new nurse take care of me for the first time. Now let me clarify that Maurya is not a new nurse per se as she was a transplant nurse several years ago with Dr. Skikne. It was very interesting to hear about her career experiences and family commitments. I was also very blessed to have her take wonderful care of me today (Mary B. was helping her out with some training on my procedure today).

    Let me close by asking you to continue pray for my friends. Lindsey says she is doing better, but she is still hospitalized for complications to her BMT. They ran some additional tests today.

    The other young lady I met at our BMT Support Group meeting is scheduled to start her transplant later this week. And I have to be honest and tell you that I have met several people who have had BMT and they have become part of my life in a special way. Please remember to ask God to provide their needs.

    Finally, I don’t want you to think I am just saying this, but thank you to everyone that keeps Deborah and me in your prayers, and keeps the encouragement coming our way. You are very special people and we both really appreciate you!


    «Top of Page» «List of Events»


  9. March 20, 2008 — Start low and go slow
  10. I was blessed today to have the opportunity to wake up along side of my beautiful wife, eat breakfast with her, and send her off to do her weekly grocery shopping. Then, after she got home, we went to the gym to exercise. Our afternoon was exciting and that’s what I want to tell you about.

    We attended a KUMED Bone Marrow Transplant support group meeting where people just like us, patients and caregivers alike, all come together for the purpose of learning together. In every meeting some people have questions and others have answers. We also have a team of professionals there from various disciplines to answer the difficult questions.

    The unique thing about our group is like our nurse sponsor Amy Rice tells people all the time. Only a patient that has done a BMT has walked in those shoes and can talk about those experiences. By the same token only a caregiver that has taken care of a BMT patient can talk from experience about that aspect of this journey we are all taking together. And by participating in a support group like this we are all able to help each other learn so every one of us can have a better quality of life. I love being a part of this group!

    Today, Amy did a presentation on Cancer Related Fatigue where she told us what we should and shouldn’t do. She gave us examples of the types of exercises available to us to help us manage our fatigue. The pointers will help everyone understand how to get started in their own personal routine. It was an excellent presentation and the handout she provided was very helpful.

    During our discussion Dr. Twillman gave us all a piece of advice “Start low and go slow.” Let me just say that was intended to help some of us overachievers in the audience understand that we cannot jump back in where we were before our BMT. But we can build our way up to success if we tackle it the right way.

    At the end of our meeting Linda Barth handed out information about a training program for caregivers at http://nbmtlink.org and after taking a look at their Web site I thought I would share it here. You can never have too many resources for information.

    Now that I have her mother’s permission to share this information, I want to give you a young ladies name, and her Web site. I have asked you to pray for her without sharing her name until now. Emily goes in the hospital and will have a cord blood transplant in just a short period of time. Please keep her and her family in your prayers. If you like you can follow her story and leave her messages of encouragement at:

    http://www.caringbridge.org/visit/emilybennett

    I also talked to Lindsey yesterday and she had gotten good news from her doctor. It sounded like she may be headed home from the hospital. Please keep her and her husband in your prayers as well.

    Now that I have shared all that good news about my day I should probably tell you that it is BMT day + 65 for me. While I still have a ton of restrictions, like wearing my little buddy “the mask” any time I am outside or in the gym (I cannot go anywhere else yet), I am doing very well. I am excited to have today, and to see spring arrive with warmer weather being the norm now. Being able to go to the cancer center and participate in a support group meeting today was just icing on the cake.

    Thank you for caring enough to stop by SpraguesHope for a visit. Why don’t you take a minute and drop us a note. We love to hear from people.


    «Top of Page» «List of Events»


  11. March 26, 2008 — Recovering with ups and downs
  12. Let me open this letter by telling everyone that stops by SpraguesHope thank you. Especially for your thoughts and prayers, and the messages you leave. Everything you do for us is very encouraging to both Deborah and me.

    The next thing I want to address is how I am doing. So many people ask me on a regular basis how I am really doing since my bone marrow transplant (BMT). And I have to be honest and tell them fine because at day + 71 today I am doing very well. But there are ups and downs.

    With my experiences as a cancer patient and long-term cancer survivor I can tell you the euphoria of everyday life is one of the highest ups a person can experience. Just waking up in the morning is great; and getting to do things many people take for granted is awesome. I try to always thank God almighty for giving me the opportunity to do the things I get to do from day to day. They are all that special. Do you realize that while I didn’t want to have the BMT it was an opportunity to save my life and to give me the possibility of long-term survival? You have to see that there is a lot of good that comes from things even when they seem to be downers.

    With that explanation of the ups in my life, and make no mistake every day has its wonderful experiences, I must also admit I am human and have a down side as well. For me I think it has a two-fold explanation.

    First, I have expectations that are probably unrealistic sometimes (it’s OK I admit that I am a recovering type-a, overachiever, perfectionist). I have to reign in those expectations and that is done by keeping in touch with reality and by talking to a professional like Dr. Twillman once in a while. And with the BMT I can honestly say the chemistry in my body got so out of order that some special medication was needed to help me balance things again. I can thank my nurse practitioner Julie for being aware of that and getting me started. Then she had me double-check with Dr. Twillman to make sure I had everything under control. Doc left the thought in my mind that “What is – is” and sometimes accepting it is all I can do. The three grand mal seizures I had as an allergic reaction to the Ifosomide sure put some lead in my shoes, and slowed me down on my road to healing. I think they added a lot of baggage to my recovery process in more ways than one.

    Second, I have had a very difficult time accepting that my physical body takes time to heal. One day my nurse practitioner Julie told me the facts about my red blood cell count and explained that whole scenario to me yet again (I am a little slow sometimes). She finally said for me to do the math and helped me realize 100 days was 100 days no matter how quickly I wanted to count them off on the calendar. Do you realize I have 29 more days to go and she told me that in the beginning as my blood counts started coming up? The bottom line in this is the fact that I have had to be patient and be alright with the healing process being slow. I am focusing my mind on God being the designer of my body and while some people want to debate creation I don’t. And if God created the cycle of life for the human body’s immune system, and the timing involved with it rebuilding itself, I need to accept it and enjoy the time it takes. I will also admit that some days it is easier said than done. My counts improved again this past week as shown in the tests I had run yesterday.

    The last word on this: I have heard it said that fatigue makes wimps out of anyone and I am working hard to control it so it doesn’t control me. Exercise is my best friend at the moment, even when I don’t feel like it.

    Finally, please remember Emily and Lindsey in your prayers. I also have several other people that are special to me that could use your prayer support as well, but I cannot list their names here. Yes, today is a wonderful day and I am glad you stopped by for a visit!


    «Top of Page» «List of Events»