February Updates
When I got home from the hospital it took me a long time to make the adjustment. Both the in-patient experience and just being at home took me awhile to transition. I quickly learned that it was going to take me awhile to jump over all of the hurdles I had in front of me.
List of events
- February 5, 2008 — Feeling Boxed In
- February 7, 2008 — PhD in Waiting Room Sciences
- February 9, 2008 — Writing is Part of my Coping Mechanism
- February 13, 2008 — Post Traumatic Stress Syndrome from the transplant
- February 16, 2008 — Taking the Port out of my chest
- February 20, 2008 — Anxiety and Panic Attacks
- February 25, 2008 — Seizures are not fun
- February 27, 2008 — Encouragement from my Nurses
- February 5, 2008 — Feeling Boxed In
- February 7, 2008 — PhD in Waiting Room Sciences
- February 9, 2008 — Writing is Part of my Coping Mechanism
- February 13, 2008 — Post Traumatic Stress Syndrome from the transplant
- February 16, 2008 — Taking the Port out of my chest
- February 20, 2008 — Anxiety and Panic Attacks
- February 25, 2008 — Seizures are not fun
- February 27, 2008 — Encouragement from my Nurses
Today is day 21 of my BMT process. I haven’t written updates for several days because I have been focused on resting. During this stretch in time there isn’t really anything I can do except stay down and rest. So there’s not a lot to tell you about.
Being stuck inside my house is very difficult because at the core of my heart I want to do things. I often tell Deborah one of the reasons I love to go to a restaurant to eat is just to be around people and to see life. People are so important to me and I love to just be around people who are enjoying their lives. But the reality for me right now, is that I cannot go out anywhere, no matter what. The days are clicking off and it won’t be long before I can ease back into my life. I am getting so excited to finally get to the next milestone of my recovery (day 30).
The only activity I have been able to do the past week is to take short rides with Deborah. If it’s not too extremely cold I put on my mask and my coat and ride along while she runs an errand. And I have also taken several short walks up and down the street in front of my house, again, with that pesky mask on my face. But this activity helps me feel better and getting out for a few minutes feels so good. I just cannot go in anywhere and I cannot have anyone in my house yet. Since I have experience with the fatigue I know I must get up and move to control it. Right now I have to run a careful balance of not doing too much, but I need to keep moving. So I try to make conscious trips around the inside of my house several times a day. The little walks outside have helped me stretch that and it helps.
It has been nice not having to run back and forth between home and the cancer center so much this past week (That is one place they will let me go.). My latest test results were fine. This afternoon I get to go on another outing to get more tests run. I don’t anticipate any problems since I am feeling fine.
One of the huge battles a chemo patient faces is eating. In the hospital I literally had to pray every bite down many days. Since I have been home there have been difficult days, but Deborah has been able to fix food for me that I can tolerate. It seems to be getting better and I have a pretty steady diet of turkey hotdogs for lunch. Breakfast is typically a healthy cereal. And supper is various things that Deborah comes up with to help me enjoy it. The turkey spaghetti is pretty good and I have also been getting back to my tacos (sorry I like a little beef) on a pretty regular basis.
I guess I do have something exciting to share with you. When I started my BMT I noticed that while they were pumping me full of chemo my facial hair started to grow. I got a pretty good stand of hair going there for a while. Then on day 10 it seemed to disappear, almost overnight. Yesterday, (day 20) I noticed my hair is starting to grow. It’s pretty neat! Now I have baby eye brows and some facial hair growing. My head, which previously had some real bare spots, is actually starting to feel like there are hairs showing up (Deborah says there are some spots starting to look dark).
That’s enough about me. May I ask for your help? I would like to ask everyone to pray for a young lady that just started her transplant a few days ago. I want to respect her privacy so I won’t give you her name. But she is going through a tough time with the chemo and full body radiation right now. Pray that God will give her everything she needs to make it through this procedure. And while you’re at it, pray for all of the BMT patients for healing. This is not an easy thing to experience. But I believe in prayer and people who pray for others truly make a difference in our lives. Thank you for caring!
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Today is day 23 of my BMT process. The big news I have to share with you today is that my latest tests, which were run on Tuesday, show that I am progressing as expected. I am very pleased that I am able to stretch my test routine out to once a week now.
I sure hope I haven’t been sounding like a broken record complaining about being stuck inside my house. It is a small price to pay for the opportunity to get well. After all a Bone Marrow Transplant is no small procedure and it takes time. And, as I have told several people over the last couple of days, I can tell that I am getting better if I look back a week. Even though the day to day grind seems overwhelming at times, I am blessed to see progress. Thank you for your prayers because I truly believe they are making a difference for me.
Let me try my hand at a humorous story. The other day, after sitting at the cancer center for approximately two hours for a simple blood test and its results, I came home and called my Uncle Gary. I told him that I had just graduated with a PhD in “Waiting Room Sciences.” Lately, I have been sitting there each and every time I go in, and for whatever reason, thinking it would be fun to start a log book. Now for anyone that doesn’t have a clue what I am talking about pilots are required to log their hours flying. So I keep thinking that I should start a Patient’s Logbook and write-in my arrival time and my departure time then tally that up (What do you think should I have each medical technician, nurse, and doctor that sees me sign-off on their visit?). All that would be left to do would be to find a university that would take those hours and provide various degree levels for the accomplishments. The typical educational levels would work fine. I know that by now I would have to have enough hours accumulated to have a PhD.
On a more serious note I asked everyone to pray for my friend that is in the process of getting her BMT. I just got a note that she has finished her TBI, and her stem cells are coming in today. If everything goes as planned she said today is going to be her Day 0. I have been praying for this young lady and her family since she wrote me telling me about her journey. And I want you to know that I appreciate your intercessory prayers on her behalf. I just talked with her and she has given me permission to share her name so please pray for Lindsey as she moves forward with the process.
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Today is day +25 since my BMT. I am so excited to see that number grow because it means my body has had time to heal. It takes so long to come back from a BMT. And I still have a long ways to go, but we are making progress. (See my new certificate (PhD) Thank you Dave!) I think it is important to remind people why I write this journal (and it will help me focus myself as well). Since there are several reasons let me break them down for you and share some of the details about each one.
First, I want to be transparent with people that are going through or getting ready to face a similar situation in their lives. My goal in this case is to help them learn from my experiences. Second, I use my story to help a person that may simply know someone else that is dealing with cancer and its treatment regimen. I have often been told my story has helped someone know what to say or how to help a family member or friend.
Third, I always try to mention how I approach the life and death issues I face. I don’t walk this journey alone I go into each and every day from a perspective that God’s power is at work in my life.
Fourth, to keep family, friends, and colleagues who want to keep up with my medical case and my progress up-to-date. It amazes me to look at my guest book and see who is and isn’t listed there.
And finally, because I truly love writing and I must admit it is part of my coping mechanism. That is because it helps me focus my mind on things that are important to me and it helps me journal my progress. And, when I perceive that I am helping another human being by telling my story, I believe I am doing what God intended for me to do.
Over the years I have learned how much a personal story, especially a success story, helps people (I am speaking as a long-term cancer survivor that is thankful for God’s blessing in my life here). Then, when I hear from someone my story has helped, it adds fuel to my internal fire to keep going.
With that background I want to be honest and tell you I have been fighting a battle in my mind. Right now, with my blood counts all out of whack and my emotions running up and down, I have really had a difficult time. For example, when I get up a bit too fast sometimes I get a little dizzy or light headed. My nurses have explained to me that a lot of this is the vasovagal reflex from everything I have experienced over the past four months. And it may be the antibiotics I am on too. But no matter what causes it when I get that feeling it scares me to death. And when it happens on one of my down days it seems to be worse. You may remember that I had to go back on the Ativan to help me control anxiety and this is why.
I mentioned my down days. I do have to admit I have had several good days since getting out of the hospital. But I have also had several down days that have been quite challenging too. I am working through these with God’s help. And Deborah reminded me this morning that I have never had to come back from literally nothing before, like this bone marrow transplant has forced me to do. So this is new territory for me. My nurses have told me it will take between six months and one full year for me to fully recover. They have also reminded me that I will have good days and bad days – it is part of the deal. So I can’t get in a hurry (I can’t help it that I am a recovering Type-A personality with perfectionist traits [I know – Nancy an overachiever too.])
I hope that bit of honesty helps someone. By admitting these things I hope it helps me calm down.
Finally, the young lady I have asked everyone to pray for (Lindsey) reported this morning that she is at day +2 and doing well. She is struggling with getting sick from the TBI. Please continue to keep her and her family in your thoughts and prayers.
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Today is day +29 since my BMT. I have some catching up to do so let me get started. Right now I am kind of struggling with the ups and downs, or as some people would call it the peaks and valleys. I have mentioned this phenomenon before.
The weekend was really good. I had several firsts on Saturday: (a) Visited the Gym to ride the stationary bicycle for 30 minutes; (b) Drove my car for the first time since last November to and from the gym with Deborah supervising; (c) Ordered takeout food from a restaurant and got to enjoy something different since mid November last year. It was a wonderful warm day too, which was great. Sunday turned off cold, but that was okay. We stayed in and rested all day. Monday, I had to give in and take an Ativan for anxiety in the morning. I made it back to the gym and rode the bicycle for 30 minutes again.
Tuesday, I had my blood tests run and saw my nurse practitioner (Julie). To start off that visit my nurse (Ann) talked to me about anxiety since that was my chief complaint. She explained that my mind has to get used to me being well again. And that this is going to take some time. My problem is that I keep trying to be that overachiever, and my body just isn’t keeping up with my expectations. So I was started on another medication to help me pace myself for a while (Celexa). And, as luck would have it, I was taken off both of my antibiotics for several days so they can rerun my blood tests Friday morning. This is the way we do things: test and adjust; retest and readjust. They say I am dealing with what is known as Post Traumatic Stress Syndrome from the transplant. Right now it keeps me pretty stressed out just trying to keep up with everything.
A little side story to go along with my Tuesday; when I got home from the doctor I got the shakes real bad. I thought to myself this feels like by blood sugar is low. So I grabbed the old meter, snapped my finger with a lancet, and let that little test strip siphon the blood into itself to run the test. Guess what? I was right and I had to grab a snack to get that taken care off. So, does that help you see just how goofy things are right now? And my nurses keep telling me to chill out and let them take care of me. I am told I am my own worst enemy because of all my experience being a cancer patient. The general consensus is that I know too much and over think things.
Now to top all that off today (Wednesday) started out fairly well. But after lunch I got nervous again. I have been told not to let myself get boxed in and cause a panic attack, but I still didn’t get it. I took an Ativan then went to the gym to ride the bicycle. While I was able to ride 30 minutes and walk off some of the stress I still wasn’t sure what was going on so I had Deborah take me to the cancer center. Once again, my nurse Ann came in and talked things over with me. And, once again, we concluded that Daryl’s brain was the problem. I took another Ativan mid-afternoon to help calm me down and I am scheduled to see someone next week for some help working through all this extra stress. The thing that bothers me is I know the answers to this problem I just don’t have the ability to execute them by myself right now. But I am okay with asking for help and taking it.
Part of my stress is tomorrow I get my Groshong catheter taken out. Then Friday I get additional blood tests run (yep the old fashioned way with a needle). It’s been, and continues to be, a busy week. I’m really doing alright I am just having a difficult time understanding how long the recovery is from a BMT (I get real excited on the good days). And they keep telling me it’s months down the road and I haven’t even hit 30 days yet (I’ve got an answer ready tomorrow!). Seriously, I would appreciate your continued prayers as I work through this challenge. I know that God is here along side of me and he will get me through it.
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Today is day +32 since my BMT.
I reported last time that my week had been very busy and there was more on the schedule for Thursday and Friday. Let me catch you up with the news.
First, Thursday morning’s procedure to remove my Groshong catheter was fairly easy. They took me into the procedure room, placed me on a table, and then prepared me for the doctor. After the sterile field was ready I got several shots of Lidocaine around the area where the tube exited my skin and up the canal it was tunneled into before being inserted into my vein. The sticks and the burn of this procedure were pretty uncomfortable. Then the Doctor cut loose the cuff from my skin where it sealed up the exit point in my skin. Next, he told me to look to my left and take several deep breaths as he held a lot of pressure on the entry point of the catheter into my vein in my neck. During that time he pulled steadily on the tube to remove it from the right side of my chest. The pressure was maintained on the vein the tube came out of for approximately five to eight minutes to makes sure it was sealed off. When it was out he showed me what it looked like and where the cuff was that had grown to my skin. It was pretty amazing to see how long that little thing was.
When the procedure was finished I had a pressure bandage placed over the wound and got up and headed out the door. The whole process took about forty-five minutes walking in to walking out. After twenty four hours I took off the bandage and that little hole is healing up fine. It was sure nice to take a shower last night without having to cover up that entire area on my right side. And we didn’t have to flush the two tubes either. Having this little device out of my body means I am making progress and I am very excited. The only down side is I have to lay out my arm for the needle for all my blood tests now, but that isn’t any big deal. In fact, I got my first blood test run Friday morning.
The blood test Friday morning was an extra one. You might remember that last time I mentioned they took me off both my antibiotics so they could rerun my blood tests Friday. As it turns out one of the antibiotics appears to be causing my blood counts to drop which isn’t a good thing. After I was off the antibiotics for a couple of days the blood counts rebounded. I went back on the Acyclovir yesterday and we will retest me on Tuesday, and then determine what to do about the Bactrim (the Bactrim is suspected to be the problem).
Let me clarify that I have to take the antibiotic Acyclovir to prevent me from getting herpes zoster (shingles). And the Bactrim is used to prevent me from getting Pneumocystis (PCP) pneumonia. Since it appears I am having problems with the later antibiotic I may have to do a different treatment with some type of inhaler next week. That decision will be made after we see how the test results turn out. This is part of the regimen I must be on for the first six months past my transplant.
The anxiety seems to be controlled with the Ativan while I am getting the Celexa in my system. It is my understanding it takes a couple of weeks before it will kick in and help me out. When that happens I will back off the Ativan slowly with the help of my nurse practitioner. I can’t wait for this to level out.
I guess the only way to explain how I feel right now is fatigued (or tired as most people would understand it). My body is still rebuilding cells and they tell me that alone takes a lot of energy. I need a lot of rest right now so for now I am taking it easy. I did go to the gym today and walked and rode the stationary bicycle. They tell me it takes months to come back from a BMT unlike the chemo I have had in the past. But as my friend Dave says God is good, especially on the days it seems tough.
Please continue to remember Lindsey, and all the other BMT patients in your prayers. This is a pretty tough business.
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Today is day +36 since my BMT.
It’s time to give everyone an update. I am feeling very well, but still dealing with fatigue. My routine right now is pretty much getting up in the morning, eating breakfast, moving to my recliner and covering up with a blanket to keep warm, then listening to my radio while I catnap. After a couple of hours I seem to wake up a bit, but typically just in time for Deborah to come in and fix us lunch. Then I may or may not try to look at my e-mail and visit the CarePages Web site. By then it’s typically time to plant it in my chair and continue my catnap routine for the afternoon. I do manage to get up long enough to eat supper. Then, as you might guess, I resume my evening in the chair getting rested up for bedtime. I typically take a shower and fall into bed ready to sleep the night away.
Now that sounds pretty drab and boring doesn’t it? Let me add a couple of additional facts: I do try to get out two or three times a week and go to the gym with Deborah to ride the bicycle. And don’t forget that I do have a weekly appointment at the cancer center for blood tests. Last week they kept me running quite a bit and that may be part of the reason I am so tired. In the situation I am in right now I can definitely tell when I burn energy, and it takes a while to rebuild it. But it’s not all bad and I don’t want to make you think I don’t have any good days mixed in.
You might remember that I went back on Acyclovir by itself last week. Then Tuesday, they ran new blood tests to see how my counts are doing. I got good news and my blood counts are coming up as expected. The next step is for me to go back on my regular schedule for Bactrim this Thursday (You may remember I only take that antibiotic on Monday and Thursday.). My routine blood test next Tuesday will determine if putting me back on Bactrim is going to be a problem again (causing my blood counts to drop). Let’s hope this works out and that I don’t have any additional problems.
My other news concerns my visit with Dr. Twillman yesterday. I was schedule for a counseling session to talk about the anxiety and panic attacks I have been dealing with. He listened to my description of the situation then gave me some explanations and suggestions for dealing with this. First, he explained there is a normal threshold of anxiety in a person’s life. Next, how spikes in that could be panic attacks. I understood that the spikes tend to be self limiting. Then he explained two things we can do to resolve the issues I am dealing with.
In order to raise the threshold for my anxiety level the first option we are using is the drug Celexa. This is a temporary solution while my body heals. In addition, the second option is to keep my overall anxiety level down for a while. Again, this is to accommodate my healing. My anxiety levels are exacerbated because of the seizure I had from the allergic reaction to a chemo agent, the courses of chemotherapy I have recently completed, and the fact that my normal coping mechanisms have been depleted with everything that has been going on. The way Dr. Twillman advised me to deal with this situation is to follow three basic guidelines. First, when I feel the anxiety starting to simply admit that I have no control over it (Like the steps in a 12-Step program). Next, take action to distract myself from the feelings. And finally, practice relaxation techniques to help myself chill out. Doc said he heard a quote one time that sums it up pretty well, “What is – is.”
As we finished the session Doc also reminded me it takes longer to recover from the BMT than my past chemo treatments. And this process is known for the patient taking two steps forward and one step backwards.
Finally, our prayers for Lindsey have been answered. Her cells have engrafted and her counts are up. They are talking about letting her go home soon. Praise God!
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Today is day + 41 since my BMT. Last week I had a minor complication that unexpectedly put me back in the hospital for one day. Let me share the details with you.
Last Thursday I was spending time with Deborah at home. I had gotten up and moved into our bedroom where she was cleaning, and had laid across the foot of our bed to relax. All the sudden I had a seizure and Deborah had to call for help. I was transported to KUMED via ambulance and admitted back on the BMT Unit 41 to run some additional tests.
Shortly after arriving in my hospital room I had a second seizure and was cared for by the nursing staff. I was evaluated by a Neurologist, and after running a series of blood tests, a CAT scan and MRI on my head, and an EEG they were not able to find any new reason for the seizures. That day I had started back on the antibiotic Bactrim and was adjusting my daily dose of Ativan, but they are not sure what impact that had on the situation.
Some of you might remember that I had an allergic reaction to the Ifosfamide chemotherapy back on December 12, 2007, and that caused a seizure. It is difficult to know for sure, but it appears that has something to do with the recent events. I was started on medication in the hospital called Keppra, which is supposed to prevent any additional seizures. After being given the initial IV doses I was started on the pill form and will stay on that for now.
My next blood tests and doctor’s appointment is tomorrow. Right now I am very fatigued and find it very difficult to concentrate and I need to rest so I will close. I’ll try to post another update in the next couple of days.
I really appreciate your continued prayers and your notes of encouragement. Thank you for caring!
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Today is day + 43 since my BMT. I have also seen my nurse practitioner (Jan) and had blood tests run since my last update. The news was good and I cannot wait to share it with you. First, I want to tell everyone that posts notes to me that I really appreciate your words of encouragement. There is simply no way I can answer everyone so I hope you will not be upset with me.
Now, as you might imagine, it took a couple of days for me to get back on my feet. The fatigue was pretty bad after the seizures, and my mind seemed to be in kind of a fog for a while. I am doing much better today and feel more energetic. It’s hard to believe tomorrow it will be one week since all the excitement happened. But I am glad to be able to be at home and to have some time between me and the episode that landed me back in the hospital.
I had my weekly appointment yesterday and was thoroughly checked out by my nurse practitioner. I also spent a long time talking with her and my nurse (Carrie) about my recent issues so I could get a handle on things. All that was a scary proposition to say the least and I needed to talk out my feelings about everything that has happened. It really helped me to tell them how I was feeling and to get their feedback. I learned I am only human and being scared in a situation like this is normal. And I was reassured that I am doing everything I am supposed to be doing and I’m not causing any of the problems (I know that sounds goofy but I always worry I am not doing something I am supposed to be doing as a patient).
The blood test results came back yesterday, where they are supposed to be, but there was one reading they wanted to double-check. So today I had my Uncle Gary take me in for the additional blood test and it came back normal. With that completed I was reassured that all my blood counts are indeed where they are supposed to be at this point in time.
One other thing that had to be tended to yesterday was an inhalation therapy treatment to replace the antibiotic I haven’t been able to get going. Since the Bactrim has been a problem for me every time I have attempted to take it I was given a Pentamidine inhalation treatment to take its place. This is to prevent me from getting the pneumonia (PCP) I explained earlier. It was a simple procedure and will have to be done approximately every three weeks for six months.
I am following my instructions to stay home and away from people right now with the flu bug out in force. They tell me my next huge hurdle is day + 100 when I can get my new CAT and Pet scans run. That is to make sure the disease is in complete remission. In the meantime I have to rest and get plenty of nourishment so my body can heal. I am also riding the stationary bicycle for approximately 30 minutes on a regular basis now to help manage the fatigue. It really helps.
Let me close with additional good news. I have been asking everyone to pray for Lindsey and I just found out she got to go home earlier this week. Please say a special thank you prayer on her behalf and remember all of us who are BMT patients trying to recover.
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HOPE in the Heartland 