Released!!!

We were officially released back to Wilmington today. They removed my Hickman IV Port and took another bone marrow sample. I also had a CT scan and the normal blood samples.

I am sorry this update was so long coming. I was not in the mood to type anything and Wendy was doing a great job. I am doing very well. My appetite is good, my hair is a quarter inch long on my head and I can stay awake most of the day. If I get a good 1-2 hour nap i am usually in good shape for the day. My blood has returned almost to normal and I am slowly being tapered off most of the drugs. My diabetes is under control and I hope to go one shot a day soon.

All in all things are good. I have an appointment with my Wilmington doctor on Wed next week so I will update later next week once we get settled in in Wilmington. Thanks for all your support and I will see you all soon.

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