I continued to navigate the many changes I experienced after the Bone Marrow Transplant.
- April 2, 2008 — Change for the worse and for the better
- April 6, 2008 — Gifts that encouraged me
- April 9, 2008 — New life abounds
- April 14, 2008 — Significant things
- April 24, 2008 — Very simple treats
- April 26, 2008 — My first outing
- April 29, 2008 — More good news
- April 2, 2008 — Gifts that encouraged me
- April 6, 2008 — Gifts that encouraged me
- April 9, 2008
- April 14, 2008 — Significant things
- April 24, 2008 — Very simple treats
- April 26, 2008 — My first outing
- April 29, 2008 — More good news
When you wake up in the morning what is the first thing you think about? I can tell you my perspective on things has definitely changed over the years. And I can attest to the fact that good news in very encouraging and adds to the luster of a day.
Today is BMT day + 78 for me. And my trip to the cancer center this week was a little different than before. I know that leaves some questions in your mind so let me offer some explanation. But first, let me tell you Monday was a bit scary for me. For the first time in a long time I had a little bout of diarrhea in the morning. That was followed by an elevated temperature, which was up and down all day long and into the evening. (Now for people that don’t know: BMT patients are under strict orders to call in at 100.5 degrees because a temperature is taken very seriously for us.) I only got to 99.5 degrees, but it was nerve racking to say the least.
The thing I feared most was getting sick in the middle of the night and having to go in to the hospital. Things turned out ok and I made it overnight without any problem. Tuesday arrived and I woke up exited to have the new day in front of me, and to have my appointment for blood tests and doctors appointment that day. By the way my system seemed to be back to normal and I was back at my normal post BMT 97.5 degrees.
Yesterday, I walked in with my mask (see in older pictures) on as normal for the past several weeks. When my Nurse Practitioner (Julie) walked in the examination room she asked why I had it on, and she went on to ask if I was sick or something. I promptly responded that I was simply following her instructions to wear it all the time. Then Julie proceeded to tell me I didn’t need to wear the mask all the time any more. Just to keep it with me in case I ran into a situation like somebody coughing. Then I was to immediately put it on to protect myself.
With that I immediately took off the mask and showed off my mustache and beard. Then I asked when I could shave it off. The answer was, “anytime you want to.” You might recall I attempted this grooming task a few weeks back and one of my nurses objected. I am all set to shave now it is official. After Deborah gets an updated picture of my mug I will do the honors again.
We quickly turned to some additional questions: Food – No limitations at all now; Dental appointment for regular cleanings – After six months; Using cologne after shaving – use limited amount to make sure it doesn’t cause any problem like a rash; Then I talked about my neck pain from my old whiplash injury – I was given the ok from my NP and Pharmacist to start taking Glucosamine Chondroitin MSM; Being out in public – still use extreme caution no big groups of people; eating in a restaurant – limited using extreme caution. The next topic was a bit stressful for me.
After all my blood tests were run and came back at the levels my NP expected for this time in my BMT cycle we moved on to the topic of appointments. Since I am starting the Glucosamine Chondroitin MSM I need to have blood tests run again next week when I get my breathing treatment. Then we stretch them out to three weeks unless a problem occurs. What a blessing! It is time for this patient who is so dependent on his doctors and nurses to start building some space between himself and them. And without all the limitations, I have to start working my way back into life – the life of a survivor. To get started I have been calling in to meetings at work and doing some little things, but I can tell it is going to take time to get the next phase of going back to work completed. Dr. Kashyap taught me to “blend in” and I get to do that again.
The mug shot photo with the mustache is there for you to check out for a little while. Thank you for checking in.
Every one of us have special people in our lives wouldn’t you agree? I must stand up and acknowledge that I have a lot of special people in my life that give to me in ways I would have never dreamed of. There is one lady that went the extra mile for Deborah and me this weekend. The story starts many years ago when I first dreamed of writing my story. As anyone that has read my book knows, I acknowledged several people for helping me take on that mammoth project and finishing it. I had a team involved before and during the entire process. Since it was published and released in November, 2007, I have received two very special gifts. And I must also mention that I have received several letters in various forms expressing gratitude to me for writing my story. It is the way the gift this weekend came about that I want to share with you tonight.
My oncologist Dr. Banshi P. Kashyap, M.D., FACP cared for me approximately 12 years before closing his private practice here in Shawnee Mission, Kansas and moving out of town. One day, after he had encouraged me to get it finished for a long time, I asked him if he would write the Foreword to my book. He agreed and I was so happy, but he didn’t tell me about an idea he had in the back of his mind. I guess you could say he was planning a surprise for me.
One day when I was in Dr. Kashyap’s office for a treatment my nurse Nancy Ann Witten, RN, OCN who had cared for me for many years, handed me a piece of paper and asked me to look at it. Then she explained that Dr. Kashyap had asked her to write a poem for me to include with the Foreword he was writing. When I read it for the first time I was amazed at the talent she had for poetry, and the message the words she had written told. It wasn’t long and I had both the Foreword and the poem together in my manuscript.
With that background in mind the first book-related gift I received came from my friend Rodney Joel who made me a shadow box with my book cover inside. It was also detailed with special wood to create the lone daffodil. The second book-related gift came on Saturday (4/5/08) from Barb Housh who had purchased my book and read the poem, which made a tremendous impact on her all by itself. One of her ideas was to use a shadow box type frame like Rodney had built for me. The rest of the story is pretty incredible as well.
I was told that Barb described in words the vision she had in her mind when she read the poem and put Deborah and me together with that thought. A friend of hers took the words and put together the photograph and words to Nancy’s poem to complete the idea. There were a couple of options, but Barb asked some other people’s advice then chose the one to have framed for our gift (See the photographs: Gift One and Gift Two).
Perhaps a more intriguing story is the fact that I wanted to use a photograph of big redwood trees with the sun shining through them for my book cover, but we had a wonderful graphic artist help us design the cover. When the lone daffodil idea came from our discussions with her it was a no brainer to go with that icon for survivorship. It was neat to see the original ideas I had, the idea Rodney came up with, and the idea Barb came up with all fit together like pieces of a puzzle. And Deborah and I have two wonderful pieces of art to admire from friends who acted on their ideas simply to show us they care.
Today is BMT day + 82 for me. I have my PET and CT scans scheduled and I’ll have the results by the end of the month to share with everyone. My friend Lindsey finally got to come home from the hospital; and Emily is in the heat of her battle after getting her new stem cells last week. Please keep them and our other BMT friends in your prayers.
Let me close by saying I got a little carried away with myself last week and overdid some things. This week I need to keep a slower pace, but things overall are going well.
It is a sunny day as I sit here at home looking out my window. This week, for the very first time, I have seen the trees showing off their spring buds. The rain we had earlier in the week really gave them a boost. And it is getting easier to hear birds sing as more of them return to their spring rituals. Looking at the thick blanket of grass that has already turned bright green is comforting. In fact, everywhere I look I see renewal from the winter, and life springing forth into our next season. What a beautiful time of year here in the heartland of the United States of America. What a wonderful time to be alive!
I can tell you that it is also exciting to have the opportunity today to check off post BMT day + 85. But the most exciting news is the fact that my blood test results came back excellent at the cancer center yesterday. My routine annual checkup with my sleep specialist Dr. Ann Romaker today was also very positive. So all in all things on the medical front are where they are supposed to be at this point in time.
Perhaps the neatest thing I have to report is that I am now able to get out in public a little bit using caution not to be in crowds or around anyone that is sick. That has afforded me the opportunity to eat a few meals outside the home; a first since last November. And I have been able to visit a couple of people to catch up in person instead of talking on the telephone. These things are real treats for me!
My only issue seems to be anxiety and my medical team continually tells me it is normal based on the BMT process. And because I am a long-term survivor who has had chemo before, I tend to think the recovery process is going to happen overnight (it never really did, but it was a lot faster than the BMT) and it simply will not. Part of this is fatigue and I must continue to exercise to manage it no matter how I feel. My weakness is being a patient that is patient with the process. We also have to remember the physical rebuilding that is going on inside my body because of the damage done by the BMT. It all just takes time.
I am continuously reminded to set attainable goals each week and to work on them. They promise me I will be able to see progress by doing this, and that will give me a sense of accomplishment. Being totally honest and transparent with you I think sometimes I set goals that are perhaps just a tiny bit out of my reach. But I just keep adjusting and moving forward and it seems to be working. It won’t be long before I reach some of the goals I have on my to-do list. It is taking longer than I expected or want, but I am making positive progress by persevering and working at it.
Now that I have shared the details about my situation I want to ask everyone to continue to pray for all my BMT doctors, nurses, and support staff. They need wisdom to care for all of us. Also remember the families that are caregivers because they have an extraordinary difficult time during this process. But please ask God to give each of the patients what they need to make it through their day. We are all at various stages in our treatment regimen and working hard to get back to our lives as survivors. This is not an easy process, but with your prayers we can do it!
I cannot close without asking you to remember two of the young ladies I have met. First, Lindsey cannot get past the fever problems she has been having. She is in the hospital yet again. And finally, Emily is still in-patient waiting for engraftment of her new stem cells. Please continue to pray for both of them.
Thank you for your prayers and notes of encouragement. Having you all as a part of my support team is very special!
Today is a very special day for me. It is BMT day + 90 and I can certainly tell that God is answering everyone’s prayers on my behalf. I have been thinking about significant things I could report that may be helpful to my fellow transplant patients, and encouraging to other people that read the story about my journey. I have a couple of things to share. First, when Dr. McGuirk released me from the hospital following my autologous stem cell transplant he warned me my appetite was going to be a problem. As soon as Deborah got me home she got a menu established to keep me eating and I was able to keep food going into my body.
Second, along the same lines as my appetite, people have to understand the chemotherapy they gave me affected my taste. Food didn’t taste good at all for quite a while. Then as my body rebuilt itself I started regaining my taste buds and food started tasting yummy again. You would be surprised how much that helps with a person’s appetite. It seems like it was about six weeks before I could eat without forcing myself to. One day I was really enjoying my food and asking for something new and different. My mainstay during that time was Turkey Sausages (I called them hotdogs).
Third, while I did loose approximately 20 pounds during the past twelve to fifteen months of treatments and the BMT, I have maintained my overall weight very well. Today I am still sitting in between the 175 to 180 pound range I have been in since getting home.
Forth, I have had three grand mal seizures that were induced by drugs. The Ifosomide started this on 12/12/07 and was followed by the other two when Bactrum was given me. While this was very difficult for me as the patient my beautiful wife Deborah was with me during each one of them and called for immediate medical assistance to care for me. I hate to think what could have happened if I were home alone during one of these seizures. And the anti-seizure medication I have been on is working.
Last, and very importantly, I noticed last week that my muscles seem to be there for me. For example when I have been riding the stationary bicycle I have noticed I could simply go through the motions. On the rowing machine I was similarly moving along at a pace without any real muscle control. Then last week I could tell my abdominal muscles were responding to my efforts to tighten them up on that rowing machine. It felt good to realize that big change in my body was coming about. With that my energy seems to be stronger as long as I pace myself and don’t overdo it.
There have been many other blessings that I have been able to enjoy during this journey. I think one of the neatest has been seeing my Uncle Gary on a regular basis. He even surprised me last week and took me to lunch after one of my doctor’s appointments. It was a very special time. I have also met a lot of special people in various places that care about other people and they have taken time to reach out to Deborah and me. Thank you to everyone!
Now this is just a reminder that your prayers do work. It is also a reminder that I don’t have any doctor’s appointments or tests to get run this week. I am excited to have the entire week off. Let me tell you what my Uncle Kenny always tells me, “Praise God!”
When they primed me for the day I would receive my stem cells they warned me that people experience different emotional responses when the transplant is done. For me it just seemed to be a routine like administering the chemo.
Today, I am celebrating BMT day + 100 and it just seemed like another day. I guess I have learned to keep my expectations in check. We did go out for lunch and enjoyed being out of the house for a treat. And I always like being with Deborah.
While I sat in the car Deborah did a little grocery shopping late this afternoon. I enjoy watching people and listening to my radio. It was kind of nice to see my baby sister as she came out of the store and walked by my car. I got to say hello and see her for the first time in a long time. She said I look good to her, but that I am skinny.
Yesterday was exciting when my baby brother called to tell me he passed his plumbers journeyman test. He has been working and going to class a couple of nights a week for several years now to make that career change. I am very proud that he is finished.
I also get to go to one of my nurses wedding this Saturday. She has taken such wonderful care of me for many years. And she wrote a special poem for my book, which many people have really fallen in love with. It will be good to see her again.
And I am excited that one of the people I met in our BMT Support Group got to go home today after getting his BMT about 13 days ago. I understand that Lindsey has made some progress now that they found out what was causing her problems (I hope to talk to her soon). And Emily seems to be on target in her BMT process as well. She will be in the hospital longer than some of us because of the type of transplant she had. But it sounds like she may get to go home sometime in the next two weeks. So, as you can tell, I have a lot of good news to keep me focused on God and his caring for the people I care about. He continues to answer our prayers.
The big event for me this week was a PET and CT scan on Monday. With that all my 100 day tests are completed on time. It sounds like they would run the tests on day 100 but that’s not what it means. I found out the goal was to get the tests all run within a timeframe just days before day 100. They will give us all the reports next Tuesday afternoon. This battle started in December, 2006, so you can imagine how anxious I am to hear the news. We are looking to hear the words complete remission. I have faith and believe I will get to hear those words!
Now even as I get to report good news there are people I know that are going through difficult times. In fact, Deborah just talked with one of the caregivers we met here on CarePages.
Please remember all the BMT patients in your prayers. This is not an easy thing to cope with. And don’t forget all our doctors and nurses, and the other technicians that run our tests and care for us. The families go through a lot too so say a special prayer for them.
Thank you for your notes of encouragement, but especially your thoughts and prayers. It means so much to Deborah and me to have you on our team.
Today has been an extraordinarily special day for me. I had the most wonderful time with my beautiful bride starting early this morning. And it just got better as the day continued so I have a lot to share with you this evening.
First, we got up and had breakfast together before going to the gym early to get that done so our afternoon would be free. Next, we went out for lunch at my favorite Mexican restaurant. Then we attended a wedding that was very special to us. And this evening we paid my mother a short visit to say hello to her.
The weather here was partly cloudy when we left for the short drive west to the small outlying town. We arrived at a beautiful church with a historical bell mounted in a court yard just in front of the entrance. Family, and friends, from near and far were in attendance.
I was very blessed to have the opportunity to attend this wedding. It was my first outing after my bone marrow transplant, except for meals in a very few restaurants we have frequented over the years. The special occasion was to see my nurse Nancy, who has cared for me for many years, exchange vows with her husband and start their lives together. Seeing a very traditional Christian ceremony with God as the focus was a blessing to my heart and soul.
We loved sitting there listening to the organ music in anticipation of a change in the music as the organist transitioned from entertaining guests to announcing the pending arrival of the wedding party. It finally happened and the wedding started. Then another transition came in the music to announce the bride had arrived. And the beautiful woman I have known and loved for many years walked through the back doors in a beautiful wedding gown with a long train.
Everything was just perfect as she presented herself to the crowd, and to her husband to be. It was amazing to see the glistening of her eyes and the expression of joy and love on her face as she walked down the aisle. I held Deborah’s hand as we both carefully listened to every word the preacher spoke to this wonderful couple as they entered into this sacred time together to worship God and take their vows. The final prayer was said, the final candle was lit, and the couple turned towards the congregation and was introduced as Mr. & Mrs. Brian Meyer.
Nothing in the world is as special as seeing two people that are in love with each other decide to spend their lives together then following through with that decision by marrying each other. It was a very special opportunity for me to be there. I can’t think of any better way for me to reenter the world after my transplant than to spend the afternoon being with people I care so much about. It was my first visit out in the world amongst people since last November when I started salvage chemotherapy in preparation for the bone marrow transplant I had on January 15. This also gave me an opportunity to spend time with some other very special people.
My oncologist, Dr. Banshi Kashyap, was back in town to participate in the ceremony. And there were several other nurses I know that were there as well. I got to meet Dr. Kashyap’s wife, his brother, and several other people during the beautiful reception. Deborah and I sat with Doc and his family, and many of the people that worked for him in his practice. It was good to spend time with Doc and talk about things. I miss him and all of his staff, but I loved hearing how happy he is in the warmer climate. I especially enjoyed him telling me how he is mentoring the younger doctors in his new office. What a wonderful opportunity I had today to see so many people I have learned to love over the years.
We get the big test results back next Tuesday afternoon. I am very excited to hear the good news and pass it on to everyone. It will really encourage me as I work to rebuild my strength and stamina.
The big day has come. My PET and CT scans along with my 100 day blood tests are all completed. My examination went well today and the doctor told me I am in remission.
This battle against my third recurrence started in December, 2006. After Rituxan, Zevalin, RICE, and the RBEAM chemo protocols were all completed, and my stem cells were transplanted January 15, 2008, I am where they expect me to be at day + 105.
I will continue the three week breathing treatments until the sixth month; one month blood tests and doctor’s visits; and in three months I will have additional PET and CT scans. There will also be additional doctor’s appointments with my neurologist to follow-up on the anti-seizure medication I am taking. My next hurdle is getting my energy levels up and building stamina so I can return to work and a more normal life’s routine. That will take some time, but I think I am doing fairly well at this point in time. It is overwhelming to arrive at this place and have so much to look forward to. Today I read some verses that had special meaning to me. Let me share them with you here: I was pushed back and about to fall, but the LORD helped me.
The LORD is my strength and my song; he has become my salvation. I will not die but live, and will proclaim what the LORD has done.
You are my God, and I will give you thanks; you are my God, and I will exalt you. Give thanks to the LORD, for he is good; his love endures forever.
Selected verses from Psalm 118: (NIV)
My heart is full of joy and praise. My emotions are numb and confused as I reach this milestone in my life. But I am thankful and have a heart of gratitude to God for his answered prayers, and to all the people that have supported me during this time. Praise God with us. And thank you for all your encouraging words and prayers.