Managing Change

List of events

  1. December 2, 2007 — What? I need a blood transfusion
  2. December 4, 2007 — Progress
  3. December 10, 2007 — Loosing my hair again
  4. December 11, 2007 — Time for the next step
  5. December 12, 2007 — Back pack with three bags in it
  6. December 14, 2007 — Learning about Seizures
  7. December 19, 2007 — Recovering
  8. December 20, 2007 — Special Doctors
  9. December 31, 2007 — That’s not the way I remember things

  1. December 2, 2007 — What? I need a blood transfusion
    It’s difficult to believe that Monday has come around again. Two weeks ago today I was getting started with my RICE chemo treatments. I have had a good two weeks with things going better than I expected in some ways and more difficult than I expected in others. Let me explain.

    Let me share the good news first. I haven’t really been sick at all. During the first several days after the three-day regimen of chemo was finished my tummy hung around the edge of not feeling perfect. It wasn’t at all unbearable and I didn’t need any medication to get by. It was just not feeling normal.

    Now let me tell you about the surprises, some things I was warned might happen, but I really didn’t expect. During my checkup last Tuesday, my nurse practitioner found my blood counts very low just as she expected. The thing I didn’t expect was leaving with four prescriptions. I had to start on: Acyclovir, Levaquin, and Fluconazole when I got home. And I was also given Lorazepam to take as needed for nausea. So far I haven’t needed the later and I am very glad for that.

    Let me continue with one more surprise. Last Friday, I experienced for the very first time being told I needed blood platelets. That was difficult for me. In the past twelve years I have never needed any type of blood transfusion because of chemotherapy treatments. However, my nurse had to explain all the details for me and I had to experience this transfusion of blood platelets being put into my body. During that little process I started thinking about the power of one. In short it took someone who cares about people to donate their blood platelets so that someone like me would have them available when they needed them.

    Perhaps the most frustrating thing is the time it takes to go over to the Cancer Center, get my blood tests run, and then wait for the results. That period of time typically goes by fairly fast. But on the days I have to see the nurse practitioner or get something else done, like the transfusion on Friday, it seems to blow the entire day. I had really hoped to get out and enjoy the sunshine with Debbie after my checkup. Then as the day wore on it got too late and we both seemed to be emotionally and physically drained. My appointment was late morning and we didn’t get released until after 4:00 p.m. A real long day and I got to leave for a while to run an errand around noon.

    The way we handled our spare time on Friday was to visit with some of the other patients. It was fun and stimulating to my spirit to talk with an older couple and their daughter who were here from about 100 miles out-of-town. The gentlemen told me about staying at the Hope Lodge while they were here. That made me realize how blessed I am to live within a short distance of the Cancer Center. I also met a beautiful young lady on my way out that was fighting breast cancer. She asked me what I was fighting (the mask I have to wear everywhere these days gives me away when I have my stocking cap on to keep my bald head warm). It was interesting to listen to her experiences with juicing. And with the wig she had on she really was pretty and so full of life and energy. It seemed to really encourage her when I told her I was a 12 year survivor.

    Over the weekend I had one real tired day and one fairly good day on Sunday. Since I cannot go out much right now I listened to several of my favorite preachers on the radio. Then we took a drive and visited some close friends for a short while. I love getting to spend time with Deborah so we watched a new Hallmark movie together Sunday evening. It was a wonderful week.

    Let me close by saying that I hope my story helps someone. It is my goal to educate people about the life a cancer patient lives and to show others there is hope. (My next appointment is Tuesday afternoon.)

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  3. December 4, 2007 — Progress
    I just love it when I have good news to report. Today is very special for me. That is because I woke up this morning and got out of bed and I am very thankful for that opportunity. Then, to top that off, a very special nurse (Mary) took my blood tests this afternoon and reported that I am back on the top side of things today. It was so exciting to hear that news!

    The way the RICE chemo works is cyclical. I get the treatments and it takes a few days for things to start downward. My blood counts actually bottomed out pretty low and they had to put me on medications (Acyclovir, Levaquin, and Fluconazole) to protect my system. I needed a little help so I got blood platelets last week to carry me through. Then my system finally started repairing itself and the resulting blood tests are showing close to normal counts today (day 16). If I remember correctly they told me the entire cycle takes about 21 days for a person’s system to get back to normal and stabilize.

    With all of that exciting news out let me tell you I was also happy to be told I could stop the medications. Now I get to take it easy for a couple of days and go in for additional tests Thursday morning. If everything looks good I will start RICE chemo treatment number two next Monday. Yes, I get to do all this again. Then three weeks or so later I will get new PET and CT scans to see how RICE worked. (Please pray that it is working so I can get the stem cell transplant and go back to a more normal routine.)

    We just finished supper and have plans to go exercise tonight. I have to be careful and wear a special mask to be out of the house. I also have a special towel they have me use to sanitize anything I touch. The only way I can do this is by going to a little community center close by where there aren’t too many people. We go late and use all the precautions so I can get out. I miss swimming but have had to replace that with a recumbent bicycle. I am also using a couple of weight machines. Deborah and I both miss our friends at the YMCA we were members for years. It was simply too far to drive and too many people. And I cannot go very often so Deborah needed a place close by.

    For those of you who are following my bathroom remodel job my brother David got the tile work done in the main bathroom this week. Now it is up to me to paint and my baby brother Dennis and my nieces husband Matt will probably help me install the final fixtures soon. I have to get things buttoned down as soon as possible because they don’t want people in our house as I get ready to do the stem cell transplant. It has to be a haven where my system is used to everything as I take a dash through deaths door early next year. It is very scary to hear the nurses talk about all the bugs floating around out there.

    Please don’t ever take for granted how miraculous our bodies are. I believe God created the most magnificent systems in the world in more than one place and the human body is simply one of them. My life’s story proves they can take a beating and still keep on functioning like they were created to do. I feel very blessed to have this story to share, and to have people like you that care enough to stop by and peek into my life. Thank you again for all your encouraging words.

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  5. December 10, 2007 — Loosing my hair again
    One of my friends sent me some notes she had written on faith this afternoon. I found that very encouraging as I ponder the fact that tomorrow morning I start round two of the RICE chemotherapy regimen. Those words reinforced what I had already studied in my Bible today.

    Since my last update I celebrated a birthday. I am now 55 years old, which in some places they consider that to be a senior citizen, and offer discounts on meals and special parking privileges. I think I am too young for that. For my special day this year Deborah and I just went to the gym and then she fixed me a nice meal for the evening. The movie we watched together was nice and relaxing too.

    Now many people are probably wondering how I feel these days, three weeks out from starting the chemo. I am very blessed to have not been sick, however, the trip to the cancer center the other day made me aware that my energy levels are a bit down. Perhaps it’s the piddling I am doing around the house that has me worn down. Just kidding! I have already told you about my blood tests and the blood platelets I had to get a while back. But I haven’t told you yet that I am losing my hair in patches like they warned I would. Those little bald spots started appearing about three days ago and they seem to be growing now. All in all I think things are going very well and I am very blessed!

    Over the past several days I have managed to get the master bathroom painted. Well, almost. I have one more coat of paint to put on one wall (because I ran out of paint over the weekend). It will be painted late this afternoon and the frustrating thing is it will take me longer to clean up than roll out that little dab of paint. I feel like a dork because I didn’t get that extra gallon of paint before the weekend.

    The neat part about piddling around the house is that I get to take a lot of breaks. And one of my friends told me he thinks it is probably good for me to see myself accomplishing something while I am getting well. I think he was right!

    Another of my friends sent me a Web link the other day that I took advantage of. It was a way to send a soldier a card for the holidays. I remember being away from home in the service and getting cards and letters and telephone calls from people back home. That always meant a lot to me so I decided to write a note to a soldier too. Perhaps you would like to join me in that effort. If so please visit the Web site: LetsSayThanks dot com.

    Let me close by saying thank you to everyone who has offered up prayers on our behalf. Being a caregiver for a cancer patient is overwhelming and Deborah needs all the support she can get. And even though the new medications are working well for me this deal is difficult to deal with. It has been a big change in both of our lives so we want to thank you from the bottom of our hearts for your thoughts and prayers.

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  7. December 11, 2007 — Time for the next step
    It’s time to move forward in this process.

    Round Two – RICE Chemo Day One

    I just wanted to let everyone know that my blood counts were up today and I got to get started with round two. It was so neat to have a new nurse today and get to know another one of the very special people that work hard to keep people like me alive. The day went very well.

    Since I outlined the protocol in detail for round one I don’t want to bore anyone with the same details. However, I will tell you that I talked with my doctor (Dr. Ganguli) about my left ear today. It acts up from time to time when I swim, but even though it has been over three weeks since I was in the water (yes, I miss the water and my friends at the YMCA) it just doesn’t seem to quit bothering me. Doc simply told me to start my regimen of antibiotics the day after my last chemo and to let him know if it continues to be a problem.

    One other change is the IV meds I carry home is lacking the Benadryl this time because of the tremors I had in my right arm during my last treatments. Now I am simply carrying two liters of fluid to keep me well hydrated and the Ativan. The back pack they rig up for me to carry all this stuff is heavy. And, I guess I should mention the lines keep me tethered down. But its only for a few days and I get it taken off.

    Other than being tired from the combination of the Benadryl they gave me as a premedication for the Rituxan, and just sitting there from 08:00 a.m. to 4:30 p.m. today, I am doing great. We had a wonderful dinner together tonight and thanked God for letting the ice storm pass us by without losing power or having to cancel my treatments today. We also prayed for the people that have problems and the people that are working to resolve them quickly. The ice storms throughout the entire middle part of our country were devastating.

    I have gotten to know several of the nurses now, and I enjoy visiting with them as they go by the little cubicle where I spend my days. And I truly enjoyed my visit today with Dr. Ganguli when he checked me over and talked with me before I started today’s regimen. The people are all wonderful and they really care about their patients. I am so blessed to have all these wonderful people taking care of me.

    Tomorrow is day two of this three-day regimen, and Friday I have to go in for a checkup so it will be a busy week. I’ll do my best to keep you up-to-date.

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  9. December 12, 2007 — Back pack with three bags in it
    I still have more to do.

    Round Two – RICE chemo day two

    Today was uneventful. My nurse Brooke got my tests run this morning and we waited until time for me to start the chemo. It has to be started within certain time ranges following the day before, so I had to let the clock catch up with us for about an hour. That gave me time to chat a bit and anyone that knows me knows that is okay with me.

    During my first round the second day was the day I had tremors in my right shoulder and hand so I am hoping and praying that doesn’t happen again. But if it does I already have instructions from Dr. Ganguli to use my medication pump immediately. It should stop it like the last time. I refuse to worry about that so I am trying to keep my mind busy thinking about other things.

    You might be interested to know the little back pack I told you about last night have three bags in it tonight, each connected to its own portable IV pump. One is chemo that will run for approximately 24 hours, the other is simply saline to keep me hydrated and moving the chemo out of my system, and the other is my buddy Ativan which is running ever so slowly to keep me medicated to prevent any nausea or other side effects from happening. It seems to work very well. Do you care to venture a guess how much that little thing weighs? Okay, I’ll tell you its 13 pounds on my digital bathroom scales.

    I also started to have more hair falling out that staying put on my head so when I arrived home this afternoon I got the razor out. It only took me about one hour to get that mess off my head. It really needed to be shorter before I got the razor after it, but hey I had time on my hands and determination to look like my niece’s husband (Matt) and my nephew (Jonathan) who wear their shaved heads in pride all of the time. I’m going to be in style with them for several months so I might as well get used to it.

    Now I want to preface what I am about to say as being a special blessing. It is because of God’s blessing me that I was able to write my story and find a publisher to get it published. I told everyone the day it went on sale at my publishers Web site. They also gave me a release date of November 27, 2007, so I started watching the Internet search engines and sure enough it showed up for sale. I was so happy to see all that work finally pay off. Last week I talked with my Marketing Representative and she is holding off on any book signings until after my stem cell transplant is finished. And she was so encouraging telling me to focus on getting well and then we’ll tackle the marketing aspect of my book when its time. They did send out the typical media contact at Daily Newspapers, Radio Stations, TV/Cable Stations, and Weekly Newspapers. I told her God is controlling the timing and there must be a reason, but it was sure nice to have her support. She sent me a graphic of my books cover so I could use it as needed.

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  11. December 14, 2007 — Learning about Seizures
    I wasn’t ready for what happened!

    Round Two – RICE chemo day two – The Rest of the Story

    You might remember me telling you about the problems I had with one of the chemo agents during my first round on the second day. It was the Ifosfamide and Mesna that caused tremors in my right shoulder and down into my right hand. I had hoped and prayed that I wouldn’t have any other issues with this again. But if it had I already had instructions from Dr. Ganguli to use my medication pump immediately. It should stop it like it had the last time. Earlier I told you that I refused to worry about that and I was trying to keep my mind busy thinking about other things.

    In fact, shortly after writing those words and moving into our living room to make a telephone call to my Uncle Gary to tell him thank you for bringing me home from the cancer center earlier that day, Wednesday night it hit me again. I pressed the button like I was supposed to and it still continued and in fact turned into a full-blown Grand Mal Seizure. That required me to be transported by ambulance to KUMED and admitted to the hospital on the oncology floor so the Ifosfamide and Mesna could be stopped and I could be administered the Methylene Blue (Antidote) by injection overnight to counteract the negative side effects of the chemo agent. I was also put on additional does of Ativan for a couple of days and told I would be pretty fatigued from the whole ordeal. The only physical damage I sustained was biting my tongue and left side of my mouth. Not too bad.

    Round Two – RICE chemo day three

    After spending the night in the hospital I was moved back to the cancer center where I spent the day under close observation and receiving my last dose of VP-16 to complete my RICE regimen. It is my understanding that I will be monitored over the next couple of weeks the scheduled for my PET and CT scans to determine the current status of the cancer.

    This morning (12/14/2007) I was retested and went on additional medications. They added potassium, along with the extra dose of Ativan for now. I also got a Neulasta shot. In addition I went back on the Acyclovir, Levaquin, and Fluonazole for the time being. I am at the top of the cycle and looking forward to getting all the way through and back on top

    My next scheduled appointment at the cancer center for testing is Tuesday, 12/18/07. During that time we hope to plan the dates for the PET and CT scans to get the results of these recent treatments.

    Now since I am so lethargic and having such a difficult time concentrating I will close. Please keep us in your thoughts and prayers. It was difficult experiencing this set back, but I know God is in control. For now I will be sleeping things off.

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  13. December 19, 2007 — Recovering
    It’s difficult to realize a full week has passed since my little episode. But the good news is everything is going very well.

    My body pretty much decided to rest through the weekend then I seemed to perk up a bit on Monday. I had tests and a checkup Tuesday and got all good news. My next appointment is Friday to double-check everything. I am feeling good and just wanted everyone to know.

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  15. December 20, 2007 — Special Doctors
    I am setting at the KUMED Cancer Center today waiting on time to pass by before I attend a Bone Marrow Transplant Support Group meeting. It is sure different being shuttled around to and from my appointments while I cannot drive. My Uncle Gary has teamed up with Deborah to get me back and forth and it has been nice getting to see him more because of that. But today I feel like I got an extra special treat because I ended up here early with time on my hands and I must share it with you.

    Now let me assure you that killing an hour is not a big deal for me any time there are people to talk to. So that’s exactly what I was doing when I looked up and saw my doctor walking by. I stopped him and asked if he had a minute to visit and was delighted when he was able to talk with me and catch up on how things were going.

    This was Dr. Barry Skikne whom I haven’t seen for several weeks. And he was very encouraging to me and reassured me that everything is under control and all I have to do is just remain calm during this whole ordeal. (I have a tendency to get fired up when things seem to be crazy and they have seemed crazy for several weeks now.) After the BMT Team of doctors finishes my transplant they will send me back to Dr. Skikne so it will be several weeks before I officially see him again. All I can tell you is that I have the utmost respect for this man because my oncologist (Dr. Kashyap) sent me to him. And our visit today really calmed my spirit because I know he knows what is going on and has everything under control. I think the good Lord had me here for a reason and I feel very blessed to have had this opportunity to visit with him.

    Tomorrow I start the testing for my stem cell transplant. I will let you know what all that entails later. It’s just about time for the meeting to start.

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  17. December 31, 2007 — That’s not the way I remember things
    I know it has been a long time since I posted an update. Things have been very busy and I had a new DSL modem fail that took a while to get replaced. I am glad to report that I am doing very well.

    On December 21, I had several tests run. They were in preparation for my stem cell transplant. Then on December 28, I had the all important tests run (PET & CT scans) that will tell us how the RICE chemotherapy regimen worked. My next appointment is Friday, January 4, when I get the results from all the tests. As you might guess the ones I am most interested in hearing about are the PET and CT scans.

    I have learned a lot about the seizure I had because of my body rejecting the Ifosfamide chemo. First, I couldn’t believe how long it took me to recover from that little episode. My body went into rest and recovery mode and it took me about four days before I could do very much except cat nap. Next, I learned about the postictal state I was left in following the seizure. I have an interesting story that will help explain what I mean.

    After spending the night in the hospital I remembered my doctor hollering at me from the door. The next time I saw Doc I told him I had a bone to pick with him about that visit. I asked that he come into my room to see me and take a minute to talk with me instead of just yelling at me as he flew by the door. That’s when he told me he did talk with me, but that I was really out of it. Deborah has also told me about several things that happened that night, and the first couple of days afterwards. I don’t remember any of it. It was very interesting to say the least. I’m not interested in having complications to any other chemo agents. Not ever again! But I have been blessed that over the years this is the only real problem I have had.

    Let me also share that the emotional part of all this is difficult. My instructions are to stay out of crowds, away from children, and not eat out. I have been following the rules to the letter so that makes it pretty lonely. Deborah and I both miss seeing our friends at our regular hang outs. And I really miss my favorite foods. This all gangs up on me every once in a while and I find myself thinking about things in a negative context. I have to work hard to replace those bad thoughts with good ones. It is partially because of the impact the medication has on my body and mind. And the little seizure didn’t help that at all. But all in all I am hanging in there.

    We got brave over the weekend and tested my taste buds with beef. The chemo agents I had cause a bad taste in a person’s mouth if they attempt to eat beef. It is because beef is a source of iron. My pharmacist highly suggested I just not go there for a while. It seemed like it might be long enough so my wonderful wife made herself some beef soup and gave me just a bite (I waited until I finished eating so it wouldn’t ruin it for me just in case). I was pleasantly surprised that it tasted alright. So Deborah made me my first batch of tacos for dinner Sunday evening. They were sure good! Tonight she made a meatloaf (don’t tell her but the tacos were better!).

    Perhaps you are wondering why eating some beef sounds so wonderful. I have been eating a diet of turkey this and turkey that for about six weeks now. My favorite is probably the turkey hot dogs I eat for lunch a lot. We didn’t think tacos would turn out very good using ground turkey so we haven’t attempted them.

    Now I want to close by asking you to say a special prayer for a friend from work’s family. He was diagnosed about one year ago, within days of my third recurrence being found. God knows their names. And all I want to say is that God’s plan for his life didn’t include surviving cancer. It was a very difficult year for him and those who loved him. What an eye opener. Let’s all start 2008 by counting our blessings!

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