I'm out

Day 32 and I am out of hospital. Fresh air, people doing normal things, traffic, stores, eating at a table, being with my family and friends in a normal environment like a couch and chair. Do not ever forget how these things are so easy to ignore until you don't have them for 40 days. I feel good. My appetite is slowing returning, I at a meal of potatoes, steak and veg tables two nights ago and it tasted better than ever. I still do not have my original taste buds but I am able to eat more each day.

My next challenge is to get my stamina up. Sitting around since August has really depleted my strength, I am trying to walk every day and will be doing some minor stretch and lift stuff as directed. I can't lift much yet but I can do any necessary personal stuff. I go to the BMT clinic everyday for blood test and any needed IVs. Wendy can run errands if she needs during this time so it's good.

Since I am on some steroids I have also become diabetic and am testing myself and injecting insulin three times a day with test results. The doctors think this is a direct result of the steroids and that I taper off them within the next several weeks I will be able to control my diabetes with diet and maybe pills. I am doing good with the blood test kit and shots so far.

Now that I am at the hotel after 2:00pm most days I will update more often with any news. Thank you all for your support of the family and myself. We deeply appreciate the thoughts and prayers and look forward to more personnel contact as the weeks progress. The next milestone is my blood counts returning to normal levels which platelets is usually the last to return. I actually got Today off from the clinic which is a good thing.

Take care and call me at 919-210-6391 anytime. I got a new phone so I can get calls again.

Day + 24 Update

It's been a week since I have updated my blog so here goes. Friday Nov. 16 got good feedback from transplant team on my progress. WBC count has started to climb on its own >0.5 (normal 3.2-9.8) Still getting platelets since they are last to respond. Some visitors and good night of sleep. Sat. & Sunday good. WBC up to .7, more blood and platelets. Had some swelling of left arm but able to reduce it with ice bag.

Monday my sister Sylvia was visiting on her way back to VT from a nephew's wedding in FL. Nice to see her. WBC 1.2. Team starting to discuss discharge plans. No firm date but criteria set. Started switching antibiotics to ORAL. More platelets and blood.

Talking about discharge is exciting. Thinking about fresh air and no IV machines after 29 days is good. My appetite is starting to improve, stomach is small, and my taste has changed, stuff does not taste the same.

Tuesday and Wednesday good. Kids, Wendy and Syliva all hung out together when not here. Appetite still small.

Thursday not eventful. Overall number up. Walked .5 miles.

November 22, Thanksgiving, Transplant Team told me that test results indicate 100% of my cells are from transplant. 98% male/2% female. None of my cells are there so radiation and chemo worked as expected. Good News!

Started steroids for rash control, 3 days of these. Friday they took me to ultrasound to check my liver/spleen. Standard test, no results but did not expect any today.

Part of trip to ultrasound required exit of unit to elevator lobby. Could see helipad with copter and great view of Duke campus. I told transport person to leave me here for an hour. No such luck!

Well, time to close. Hope to be released within the next several days (knock on wood). I love you all and appreciate cards, calls and visits. I am extremely lucky to have friends and family like you.

Remember, give blood and blood products if you can. Save a life.

Peter

Day + 16 ENGRAFTED !!!

May doctors have informed me that I haven grafted with my new cells. Yeah! We have some issues with a skin condition that could be host vs. donor disease. I had a skin biopsy yesterday (11/15) and we will know more by Monday. My white blood count is now over 500 (.5) which was less than 100 (.1) last week. Other things are also showing improvement; no more hair lost on other parts of the body. "I still have my moustache!" My appetite fell off on Tuesday and I am on IV nutrients but with this new information I am forcing myself to eat something at each meal. Thanksgiving release to the hotel looks doubtful but I am hoping that a 11/25-26 release my be doable.

The last week has been an up and down one for me. I have finally realized this is not a quick thing on any fixed schedule. Being an engineer I expect everything to follow a process and schedule. But the body is God's machine no man's so he determines how it will react and definetely on what schedule.

Peter

Getting in stride

I feel a rhythm has develped now. I am comfortable with the hospital regimens like vitals, weight measurement and bloodwork done between 2 & 4 AM so they can have the results before rounds at 8 AM. What is not so clear is the was nurses/doctors determine what I get, for how long and why. Sometimes it falls into place, like a certain pill for nausea; other times they seem to guess "Let's try this for tonight and then re-evaluate." It's sorta like the TV show "House", NOT! They always explain why they are trying that protocol and what should be the effect.

I now have two things that have developed. High Blood Pressure is starting to show up so I am on a BP pill. The second is related to that. I have two different blood pressures at the same time. My left arm can be 130/69 and my right arem 157/77. My nurse was surprised by this and discussed it what the staff on duty. Looks like it happens but rare. This is typical Peter-vampire; I am rare.

I continue to fight a losing battle with hair. I can pull out at least 20-30 strands without any pain and the shower drain is gross. Shouldn't take too long to finish, or may just cut off the rest to save time.

Well, that's a quick update. Please continue to comment on blog and send cards and pictures. Jess' pictures of Liddy and Miles are great. Thank them for their support. I promise I will play with them as soon as I get out of this.

I love you all and can feel your energy during my down times. Remember to give blood and blood products everytime you can. Call Kim Lyle for details.

Peter

PS: Carl, if you want to learn the man story you have to call on my cellphone.

Birthday + 2

They call the day you get your stem cells as your new Birthday. I can see their logic as I am now experiencing a re-building of my bone marrow foundation. My blood counts remain low, as expected, and I await each morning's discussion with my doctors to find out my blood count.

I am doing well here. I am really, really fatigued in that I cannot read for long before I fall asleep. I am also starting to walk around more and use the treadmill, up to .25 mile. Ok, I know that's not alot but last week I could barely do .1 mile. Overall, I am good, better than before. Monday I had some significant sores in my mouth which affected eating and strength. They gave me an antifungal and the sores are much better = more food = more strength.

One last thing - my hair until now was ok. I just noticed that every time I rub my head I get hair in my hand. Well, I have alot of hats!

Love to all. Thanks for your prayers, and remember to give blood any chance you get.

Peter

Radiation Complete

I finished radiation today and started chemo today (yeah!) I still have my hair and am walking up and down the hall to get exercise. I am sleeping alot but that appears to be normal.

I am still getting blood (yum) and platelets when needed. The staff at Duke is great, from the people who push me down to radiation treatment to the nurses, doctors, and assistants who take care of me.

The girls are great. Kim visited me between business trips. Heather visits frequently, and she is a lifesaver for us as she is watching Annie (our dog). She is a vegetarian and she has to put up with meat smelling canned dog food.

Well, that's all for now. Still feeling good. Remember, give blood any chance you get.

Peter

Radiation - Day 4

I'm In!

Finally here and ready to go! Wendy has the computer so check her blog www.wendy-thevampireswife.blogspot.com for the most up to dat information.

It begins (2)

Meeting with Duke team went sideways for a while. They were concerned with my chest x-ray done Thursday morning and thought I might have pneumonia. Received a six pack of platelets and scheduled a CAT scan for Thursday night which indicated they were wrong.
Friday I was scheduled for removal of porta-cath and new Hickman catheter but my platelet count needed to be at least 50K. Something told me this was going to be a show stopper and I was right. Looking back at my history since January 2007 I have never been close to 30K so I had this feeling no way. Well after two units of whole blood, yum, and another platelet bag I am still below 30K so the surgery is on hold. I was told to go back to my new home for the weekend and rest.
The current plan is to admit me into transplant unit on Sunday , as planned, and then use a "HTH" matched platelet transfusion which should get me up pass 50K. Wish me luck. They seem to believe that this will get me high enough. Then I can receive my new Hickman on Monday with my first radiation that afternoon.

I am frustrated with all of these plan changes so early in the process but I guess i am moving ahead. My biggest gripe is the fact that they have my medical records which include my blood counts and they could see that one transfusion of platelets would not get me where they want but the plan did not include any backup system. Everyone needs to be an advocate for them selves and their family to remind medical personnel that things are not usually text book and that they need to be aware of each person's medical quirks for lack of a better term.

Well I feel good and am ready for whatever comes next, I just wish whatever was on the plan we have agreed to. I hate this one forward two steps back stuff. thanks for letting me vent. Pray that my medical team can look ahead enough to ask the right questions now so that once we get started we can at least finish one thing as planned.

It begins.

Thursday I have my final meeting with Duke Team for my transplant. I will have my old porta-catheter removed on Friday and my new Hickman ( multi port ) installed. Sunday I check in to Duke to begin my radiation and chemo process. That takes eight days and a day of rest and I get my new stem cells.

I am concerned but not frightened about the process. I feel confident that I will receive the best care and know that you are all there praying for me. I feel good, although weak and am glad that we can begin. It has been hell for the last 18 months with the ups, CCL cured and the trip to Italy and the downs, My problem in January and the present problem. I am looking forward to getting better and being able to sit at the beach someday.

Is this a life changing experience? So far I do not feel I need to make changes but I will appreciate good health more and being able to enjoy my life which has been great. Thanks for all your support. I will be updating as much as I can. Remember to give blood and blood products whenever you can. You will make more and you could save a life.

Oh! There is one change in my life. I do not faint every time I see my own blood being drawn. It's a start, don't you think.

Progress

I have met with the transplant team and we are on target for the near future. My heart is good, breathing good and I have been measured for the radiation treatment. My blood platelet count was really low on Wednesday so I got a bag as I was giving my Bone Marrow Sample. Jill, one of my team members did a great job and it was OK, not as bad as some of the others. For the men reading this call me if you want a good guy story I can not post.

Wendy and I have found and booked a hotel to stay at so she can be nearby during my first month in the hospital and for the two months after I am released. With luck I should be back home around Valentine's Day.

I will finish up this week at work and take short term disability. My team at work are well trained so I expect the place will not see any drop in production or quality.

Again Thank You all for your encouragement and prayers. I also appreciate your support of Wendy during this stressful time. If you get an oportunity to give blood or blood products please do so because the life you save might be mine.

Update

Yes, I know it has been awhile since my first posting. that is probably why I have not done anything like this before so chill.

GOOOOD NEWS! They have found three good bone marrow matches at DUKE so I am on track to start the process in the next two weeks. I will have several rounds of tests, EKG, CAT scans, CXR (??), meeting with radiation team and what ever is left, including my personal favorite, a bone marrow biopsy. This is a pleasent experience in the doctors examining room under local anesthesia of DRILLING into your hip bone and removing fluids for testing. Now I have never had a baby so I, as a male, and can not know discomfort and pain but OUCH. Let's just say that the first time I had it my wife said I looked like I had a seizure and was in the hospital for a week. My last two were lest eventful but hurt also. The process will start with 4 days of radiation and three of Chemo. A day of rest and I get my new stem cells. Then we start the wait and see process. I will try to update as I go and feel up to it. My wife will also be on-line so I will turn it over to her at that time.

That's enough for now and thanks for all your prayers and thoughts. A hug, no kisses yet, to each and everyone of you. Thanks.

Why the name?

This is the first time I have attempted to do anything like this. My daughter suggested it as a means of letting everyone I know of my status. Why is that important? Well, I was diagnosed with CLL, Chronic Lymphocytic Leukemia, in March of 2006. I have completed treatment but have developed a blood disorder that has affected my Bone Marrow. I am awaiting a stem cell transplant and need to get blood transfusions weekly until a suitable donor is found.

Why peter-vampire? Well I really feel better after my weekly sessions so I guess I must be part vampire. Just kidding but i do feel better after each session and my counts are back up for a few days. The problem I must face is that I can not go into any crowded places like malls, restaurants or even work since my immune system is compromised. My employer, General Electric has ben extermly co-operative and I am allowed to work at home. This, you might think is great, but you see I love people and this is very difficult for me. I will be OK but the lack of multiple human contact is hard for me. My wife has been my anchor through this so I have someone to complain to daily. I do not get much sympathy from her, but I think she knows I would just complain more if she didn't push back.

Well enough for today. For those of you that can give blood every chance you can. YOU ARE SAVING A LIFE!!!