Meeting The Boss

Well, as I expected, I got to meet the gentlemen that leads the Bone Marrow Transplant team. The team is made up of several doctors, nurse practitioners, nurses, and other technicians that care for the patients. This is getting scary!

I got to get comfortable with a totally new doctor taking over my medical case and that was something I didn’t take lightly. After all I was literally laying my life in this teams hands and trusting them to kill off the cancer and keep me alive in the process.

You can be assured that I am not over dramatizing this to grab your attention. That’s the way it works. You’ll learn more as you follow my story.

List of events

  1. November 6, 2007 — Meeting Dr. McGuirk
  2. November 18, 2007 — Turning the Corner
  3. November 20, 2007 — Hang On Tight
  4. November 21, 2007 — The Roller Coaster Is Moving
  5. November 23, 2007 — It Seems Like Military Basic Training
  6. November 26, 2007 — Focus on the Important Things
  7. November 28, 2007 — Feeling Run Down

  1. November 6, 2007 — Meeting Dr. McGuirk
    Today was the big day. It was the day planned to get my schedule for the treatment regimen I will soon be doing in hope of getting the cancer into complete remission then going on to a stem cell transplant. My appointment was in the late afternoon and I took my wife Deborah with me.

    I arrived on time at the cancer center where I was greeted by a new doctor. He was accompanied by my transplant coordinator (Janet) who I have grown to appreciate over the last several months. She has taken very good care of me and answered a lot of questions for us during the process of testing.

    Now for those of you who are freaking out over my words “new doctor” let me explain that there is a team of three doctors responsible for my treatments and ultimately the stem cell transplant. The doctor I saw today was new to Deborah and me, but he has a lot of experience and made a very positive impact on both of us. I am very blessed to have a man with his expertise taking care of me.

    The plan is to get a new PET and CT scan done this week. We need a baseline to compare with the most recent tests I had in August to determine if anything has changed. Then using those test results my doctor will also be able to determine how well the new treatment regimen works. I will also get new blood tests run when I go in for the scans. There is a slight adjustment in the chemo plans as well. Let me explain.

    My chemotherapy treatment regimen is going to be RICE. The doctor decided there is no reason to use Velcade at this time like we had discussed in prior appointments. The tentative date for my first treatment is November 19. Then approximately three weeks later I will have my second round of RICE. After that I will be retested to see if the chemo has achieved remission.

    The stem cell transplant will happen approximately five weeks after my last chemo regimen is completed. It is a very scary process, but I am looking at all of this as an opportunity, and trying to remain very positive. And as you know from earlier posts Deborah had to make some adjustments in her work schedule so I will get to spend more time with her. That is a very positive thing for me as well. When this is all said and done I hope to live to be an old man and perhaps even write my second book to tell about it.

    Now it is time for me to keep my eyes focused upon God and his power in all of this. And to ask that all of you pray for my medical team as they care for me and the rest of their patients. I will do my best to keep you up-to-date as the following weeks and months go by. Let me also say I am confident I will have a lot of good news to report so stay tuned.

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  3. November 18, 2007 — Turning the Corner
    I haven’t intentionally ignored posting there has just been so much to get done before I start treatments tomorrow morning. It’s difficult to think the day I have been dreading has finally arrived.

    Let me share a few of the highlights with you. First, on the medical front: The first thing I faced was getting new CT and PET scans done. That resulted in a doctor’s appointment so I could hear the news. The cancer has progressed since the last scans done in August. My doctor carefully explained that without a biopsy he cannot say for sure, but this may mean we are still dealing with the same cell type and there is no mutation into a different form of lymphoma. And moving right along, I had to get the Groshong catheter inserted in my chest on Friday morning. You will also notice the new picture of me after my barber took care of the hair Friday afternoon. I think I am ready to go now.

    Next, for those of you that have been wanting to know the progress on our remodel job, we finally got one bathroom 99.9% completed. That is thanks to my brother Dennis and my niece’s husband Matt who installed the new faucets and toilet for us one evening last week. Then, this weekend my brother David and I got the second bathroom ready and tiled it. I seemed to do pretty good helping cut tile and being a go for even with the catheter in my chest. It will be a while before the grout goes in and I can continue painting and finishing things that I have been doing.

    Things have certainly changed since my last Groshong back in 2000. I had it inserted in the radiology department, and a home care nurse stopped by Saturday to change my bandages and to give Deborah a refresher course on the ongoing care of that little tube that is dangling from my chest now (actually there is another change I have two tubes dangling instead of one). It wasn’t a bad procedure and there wasn’t a lot of pain.

    Perhaps the hugest challenge I have faced this week was taking my final swim at the YMCA. You may not remember that I typically swim laps five days a week. Thursday evening at 4:00 p.m. I headed down the lap lane for my last 100 yards. Swimming at my regular pace I finished in approximately two minutes then leaped out of the pool for the last time for a while. I had to tell a lot of good folk’s good bye since I can’t go to the gym until I get past the treatments and transplant. But I took a picture of the water to look at when I miss the pool.

    Let me close by saying thank you to those of you who have been stopping by my CarePage to check in on my progress. I plan to make regular updates to keep you posted. My plan is to attack these treatments with a vengeance because I have God on my side helping me stay strong. I am praying for strength and wisdom so I don’t overdo things when I have good days. And so I don’t get down in the dumps when I am having a down day. It’s not easy for me to step in out of my life and sit at home alone. So I plan to pray more than ever because I know I’m not really alone. I know God is here with me no matter how things are going.

    Please have a wonderful Thanksgiving week. Remember we all have a lot to be thankful for. Life is good! And God has certainly blessed me with a lot of nice things and he has placed a lot of good people in my life. I hope I can make a difference for someone while I undergo my treatments over the next several months. And please don’t ever forget that you are a very special person. Thank you for stopping by SpraguesHope for a visit.

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  5. November 20, 2007 — Hang On Tight
    I am feeling very overwhelmed knowing what to spend my time on right now. It seems important for me to use my energy to continue the tradition I started years ago of documenting things so other people can learn and understand about the life a cancer patient lives. But please don’t forget I hold each and every one of you in a special place inside my heart. Knowing that you all care really helps gives me strength. Thank you so much!

    RICE Chemotherapy Regimen Day 1 November 19, 2007:

    I arrived at the KU Cancer Center a little early so I would be on time for my 09:00 a.m. appointment. I later learned that really didn’t matter as the day drug out, but I did what I was supposed to do. The first thing on the agenda was a blood test (only two tubes) that was drawn approximately 09:00 a.m. and sent off to the lab. Then I started the wait…

    My wonderful Chemo Nurse (Apinya) came in and got me hooked up to the saline solution and explained the plans for my day. After the lab results come back, I was told I would see a nurse practitioner who would review the results and give me a checkup. Once that is finished she said we would start with the premeds for Rituxan and it would be administered using the normal protocol. They start slow then boost the flow up to the maximum over time.

    The next thing that happened was watching the clock. Literally! About 11:20 a.m. I expressed my frustration to a couple of the nurses. I was told I was in line and it would only be a few more minutes. Finally the nurse practitioner walked in and checked me over. She explained that things were going to happen slowly in some cases, and very quickly in other cases. My job as a patient, I was told, is to remain flexible in everything during the next several months of my treatment regimen. I calmed down and relaxed a bit after the conversation, but I am not convinced they can’t do better at scheduling things.

    Finally, around 12:00 p.m. my checkup was finished and my premeds were started for Rituxan (Tylenol tablets and Benadryl IV). In a few minutes after that we were all systems go for the Rituxan. I proceeded through that in flying colors without any delays.

    With the Rituxan completed at approximately 2:40 p.m. I started the premeds for my next chemo agent. This time I was given Decadron and Zofran both IV. There was a thirty minute wait and Apinya walked in and hooked up what she called the “real thing.” This was Etoposide (VP-16) and I was very nervous since I have not had a chemo agent like this since my treatments back in 2001. My focus was upon God and his power not this little bag of clear liquid that was pouring into my vein.

    Let me tell you quickly how my body responded to this foreign substance. I could tell my brain was doing all of its checks in order. (The Pharmacist who when over all the drugs with me last week had told me one of the biggest problems with patients like me who have had chemo in the past is shutting down our memories.) The very first thing I sensed was the aroma or smell of fried foods. It was like someone was frying chicken in the room. I wasn’t overcome with the odor, but it was very much there. I told my brain that it was OK I like that smell and have fond memories of my mother and my wife fixing me fried foods over the years (not so much lately). Then the only other thing I sensed was my taste buds checking it too. I can’t figure out how to describe that, but then within approximately one-half hour or so they were both gone. I didn’t fell any nausea or get sick.

    I was unhooked from the machine in my room and connected to a portable rig to carry out in a backpack. It contained two IV pumps, one for saline and the second one for medication in case I experience nausea. The medication for nausea was Benadryl and Ativan. As of right now I am doing great.

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  7. November 21, 2007 — The Roller Coaster Is Moving
    It’s always easier when things work the way you expect them to. After all I have moved from a doctor in private practice to a huge university setting.

    RICE Chemotherapy Regimen Day 2 November 20, 2007:

    Things were going much smoother and the day wasn’t so hectic. I immediately saw the nurse practitioner and my blood tests were drawn and back in a flash. Then it was time for the premeds (Decadron and Zofran both IV) to get hung on the IV machine. That happened about 1:10 p.m. which means I am getting within one-half hour of the chemo agent being administered.

    Then approximately 1:50 p.m. my dose of Etoposide (VP-16) was started at a rate that would finish in approximately one hour. Things went very good and we were ready to move on to the next phase. Just like day one this chemo agent just flowed into my body without any negative side effects.

    Perhaps I should mention here I got to meet a wonderful new nurse today that helped with my treatments. I found Stacy to be very informative and very kind. She worked along with Apinya to take care of me because Apinya was busy with other patients when I came in. We had several good conversations about how this all works.

    Next, at about 3:05 p.m. I was hooked up to yet another chemo agent called Carboplatin. It took about one-hour to finish. Again, no problems were encountered. Finally, the ladies came into my room and at 4:30 they had me hooked up to the next chemo agent which was set to run for 24 hours. It was Ifosfamide and Mesna and this is supposed to be one of the big guns. That’s why we are running it for so long. My backpack has three pumps tonight with fluid, chemo, and the meds I use if I get sick. Things are looking real good! I ate a normal meal with Deborah and relaxed for a while. Then we loaded me up and went to the gym where I slowly rode a recumbent stationary bicycle for 30 minutes. (I am starting to miss the swimming pool.) We came home and relaxed watching a TV program. Then I experienced a scary twitch in my right side.

    The twitch in my side began in my shoulder them moved down to my right hand. I immediately called into the hospital and talked to the doctor. I read back my current meds and described my situation. He calmly had me press the button on my IV pump to give me dose of the meds I carry. That seemed to calm things down. My instructions were to rest and monitor the situation and if it got worse or moved to the other side of my body I was to go to the hospital.

    Things calmed down and I got to bed and slept very well. This morning I am feeling weaker and the jittering seems to be underneath and not as bothersome as last night. But it is scary to feel the trembling and the extra effort it is taking think and type this morning makes me aware this stuff is working.

    It’s about time to grab a bit of lunch and head back to the KU Cancer Center so I will close for now. Things are going very well, but the scare last night was enough for me to realize we are doing the “Real Thing.” I am certainly glad I had my medication along for nausea and the tremor type activity of my right arm (Benadryl and Ativan). As of right now I am still doing great. However I can tell the energy is dropping off.

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  9. November 23, 2007 — It Seems Like Military Basic Training
    The past couple of days have been a bit challenging for me, but things are going very well. Let me start with an overview of my day on Wednesday and go from there.

    RICE Chemotherapy Regimen Day 3 November 21, 2007

    I arrived at the KU Cancer Center for my last day of the RICE regimen at approximately 11:30 a. m. My energy levels were down a bit and I could tell it was taking more effort for me to navigate. The good news is there weren’t any additional problems with my right arm or hand twitching overnight, and I hadn’t been sick at all. I think this is a good time to say Praise God! After the blood tests were drawn and I got settled in for the afternoon I finally got to see the nurse practitioner who has been taking care of me this week. I brought in my list of vitamins and we discussed the changes I needed to make on that for a while.

    Then at approximately 2:40 p.m. my nurse came in to start my premeds for my final dose of VP16. In case you have lost track I left the Cancer Center on Tuesday with a 24 hour dose of Ifosfamide and Mesna running. The goal is to get the VP-16 going at just the right time to have all three of them finished at the same time so I can go home. Things went very well and I was all set to go with a little fanny pack that contained my pump of Benadryl and Ativan in case I need it. This was a huge change from the backpack I had been carrying the past couple of days with everything I needed. It sure seemed like it was going to be a wonderful relaxing evening when all of the sudden my little tube got caught in the car and just as quick as you can snap your fingers I was unhooked from my safety net.

    Worse than being unhooked from my meds was the fact that one of the lumens to my Groshong catheter had pulled out. So it was back into the Cancer Center where one of the nurses immediately clamped off the loose connection and took precautions to keep it sterilized (she wrapped the loose end with an alcohol wipe). The next thing I know I am talking to another nurse who is there to help, but without the part they need to fix my broken catheter. However, in the end, I was able to get that little jewel repaired and we got home around 9:30 p.m. So much for getting to rest! And I must tell you the stress just thinking I would have to get a new Groshong inserted was a bit disconcerting.

    Thanksgiving morning Deborah got me up and out the door at 07:00 a.m. and got me over to KU for my tests. Things were looking good so they let me come home again. I simply called the family to say Happy Thanksgiving and sat in my chair covered up head to toe trying to keep warm. The weather here decided to dive down into the teens for the holiday.

    Today, we did the drill again (yep 07:00 a.m. again). And once again I was blessed to have a good checkup and my blood tests all came back OK. However, there was one little surprise in the offing for me. One of my nurses Jacque was at KU today and actually took care of me. This was very special since she had taken care of me back in the good old days. I got the full treatment: Blood drawn, new bandage, caps, and just the kind of TLC a cancer patient needs when things are going on with him. I feel blessed that she was there, a friendly face amongst a group of new people that are taking care of me these days. Jacque told me that she believed God moved her to a new hospital to help me make it through this transplant in flying colors. You know what I believe that too!

    I must report I am feeling good, slept good last night, but I am off the little safety net now. They tell me I shouldn’t get sick that my blood counts will just glide off downward and turn around and come back up when they are supposed to. The schedule now is for a 10:00 a.m. visit to the Cancer Center to get my first shot of Nuelasta to keep my white blood cell count working for me.

    Let me close by saying thank you for your thoughts and prayers.

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  11. November 26, 2007 — Focus on the Important Things
    It’s hard to believe I am already one full week into my treatment regimen. Much of it seems like a blur, but things are really going well.

    Saturday, I had to stop by the Cancer Center to get my first Nuelasta shot. It was good to be back at that location instead of driving all the way to the main KU campus. Then we came home and I decided to dive in with both feet. Let me explain…

    I have told you about our remodeling work. The mess was just overwhelming and Deborah and I both decided it was time to tackle cleaning up the mess. So I vacuumed everything and she came behind me with the dust rag and we cleaned and cleaned and cleaned. It sure made time go by fast and before we knew it the evening was upon us.

    Sunday, I was pretty tired from the chemo, and I was told to stay away from people, so I slept in. Then I literally sat in my chair listening to the preachers on the radio and cat knapped the entire day. By late evening I was starting to feel a bit recharged.

    Today, I worked from home and found it challenging to focus upon the things I needed to do. However, I simply took things slowly and accomplished some things I needed to get done after being out of the office for a little over one week. Tonight I rested for a few minutes and decided to drop everyone a note.

    The most difficult part of chemo for me is the feeling of my energy and strength slipping out of my body. I get worried when I start sensing things like weakness and having trouble concentrating. For example, while talking to my nurse on Saturday, I couldn’t get my mind to remember something. I told her I was sure glad she was used to chemo brain patients. But none-the-less, it is difficult being that person. Then there is the fatigue to consider.

    I must say I have been very blessed to keep moving better than I thought I would. Today is day seven so my blood counts should be getting down to their low-level (I find out tomorrow). It’s just the feeling of helplessness that can wear a person’s mind down if they don’t take care to focus on the good things. And that’s exactly what I have been doing.

    It is always wonderful to read the passages in Job where God tells about who he is. I find that comforting and that is the basis I choose to face my treatments with. After all, I remind myself several times a day, God created me from every single cell that makes me who I am. So if he wants the doctor’s to fix something with these toxic chemicals I might as well just sit back and let them do it. There is a reason after all, and I am very blessed to be part of all this. If you think I am crazy just do a little research and you will find that not that many years before my diagnosis people died from the cancer I am fighting today.

    Now just in case anyone is curious I am doing very well overall. It got cold on me last week and I guess I forgot it is that time of year. But I have a comforter from my mother that has been doing its job. I feel very blessed to be in the shape I am in.

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  13. November 28, 2007 — Feeling Run Down
  14. Yesterday I had the blood tests run and as expected my blood counts are pretty much gone. They started me on what I’ll call a pile of pills to prevent any problems in my system during this time.

    I am feeling good, but can tell my energy levels are way down and it takes a lot of effort to move. The little trip to the Cancer Center yesterday was more difficult than I expected. Keep a smile on your face and a song in your heart because God loves us. It is a wonderful day!

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