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Wednesday, March 31, 2004 4:29 PM CST
*** NEW LOCATION AND TIME - DRIVE A CORVETTE IF YOU HAVE IT!***
Memorial Services
Seating is limited
Saturday, April 3rd at 2 pm
Brethren in Christ Church
1155 Walnut Bottom Rd.
Carlisle, PA 17013
Please visit www.CarlisleEvents.com for further information!
Reception - Immediately following the service
Carlisle Fairgrounds inside Building T.
For planning purposes please send an RSVP email with your name and number of attendees to:
http://carlisleevents.com/guest/rsvp.asp
(simply cut & paste the link above to your address bar)
We truly appreciate your unbelievable support during these tough times! We haven’t had time to go through all of your guest book posts – but I promise you our entire family will read each and every entry. We appreciate all of your sympathy – but please keep in mind we know he’s in a much better place now. He’s smiling down on all of us! We look forward to seeing you Saturday April 3rd.
Our family will be donating money to an Amyloid research facility. In lieu of flowers, the family asks that memorial contributions be made to the:
Chip Miller Charitable Foundation
1000 Bryn Mawr Road,
Carlisle, PA 17013-1588
This will help research and hopefully cure this rare disease. We appreciate all of your love & support during this trying time – especially Dad.
Lance
Tuesday, March 30, 2004 8:06 AM CST
*** NEW LOCATION AND TIME ***
Memorial Services
Seating is limited
Saturday, April 3rd at 2 pm
Brethren in Christ Church
1155 Walnut Bottom Rd.
Carlisle, PA 17013
717-243-1863
Please visit www.CarlisleEvents.com for further information!
Reception - Immediately following the service
Carlisle Fairgrounds inside Building T.
For planning purposes please send an RSVP email with your name and number of attendees to:
http://carlisleevents.com/guest/rsvp.asp
(simply cut & paste the link above to your address bar)
We truly appreciate your unbelievable support during these tough times! We haven’t had time to go through all of your guest book posts – but I promise you our entire family will read each and every entry. We appreciate all of your sympathy – but please keep in mind we know he’s in a much better place now. He’s smiling down on all of us! We look forward to seeing you Saturday April 3rd.
Our family will be donating money to an Amyloid research facility. In lieu of flowers, the family asks that memorial contributions be made to the:
Chip Miller Charitable Foundation
1000 Bryn Mawr Road,
Carlisle, PA 17013-1588
This will help research and hopefully cure this rare disease. We appreciate all of your love & support during this trying time – especially Dad.
Lance
Monday, March 29, 2004 4:20 PM CST
*** NEW LOCATION AND TIME ***
Memorial Services
Seating is limited
Saturday, April 3rd at 2 pm
Brethren in Christ Church
1155 Walnut Bottom Rd.
Carlisle, PA 17013
717-243-1863
Please visit www.CarlisleEvents.com for further information!
Reception - Immediately following the service
Carlisle Fairgrounds inside Building T.
For planning purposes please send an RSVP email with your name and number of attendees to:
info@carsatcarlisle.com
Or call 717-243-7855 x133.
We truly appreciate your unbelievable support during these tough times! We haven’t had time to go through all of your guest book posts – but I promise you our entire family will read each and every entry. We appreciate all of your sympathy – but please keep in mind we know he’s in a much better place now. He’s smiling down on all of us! We look forward to seeing you Saturday April 3rd.
Our family will be donating money to an Amyloid research facility. In lieu of flowers, the family asks that memorial contributions be made to the:
Chip Miller Charitable Foundation
1000 Bryn Mawr Road,
Carlisle, PA 17013-1588
This will help research and hopefully cure this rare disease. We appreciate all of your love & support during this trying time – especially Dad.
Lance
Thursday, March 25, 2004 11:13 AM CST
Dad passed away last night in Rochester, MN at approximately 12:30am CST without any pain. He had a smile on his face which let us know he was happy to move forward on his journey to a much better place. It was beautiful to see him with the sign of peace as he ventured off to his new home where someday we’ll all be joining him. Rest assured he’ll keep a warm spot for all of us in his new found destination - Heaven…
Memorial service details are listed below – you are all more than welcome to attend:
APRIL 3, 2004 @ 1PM
Otterbein United Methodist
647 Forge Road
Carlisle, PA 17013
Our family will be donating money to an Amyloid research facility. In lieu of flowers, the family asks that memorial contributions be made to the:
Chip Miller Charitable Foundation
1000 Bryn Mawr Road,
Carlisle, PA 17013-1588
This will help research and hopefully cure this rare disease. We appreciate all of your love & support during this trying time – especially Dad.
Evie, Jen, Lance & Judy
Sunday, March 21, 2004 1:32 PM CST
It has been quite a week!
It started out on a high note with a visit to the Amyloid doctor (Angela D.). Dad had started to take the steroids and was feeling really good (the best we’ve seen in months!). After getting off the steroids his body began to retain fluid (which we knew would happen). He ended up back in the hospital on Thursday because his body didn’t handle the excess fluid very well. The hospital put him on intravenous diuretics and they have been working well to get rid of the excess fluids.
Wednesday Lance caught a flight out of Minneapolis so we had to visit the Mall of America! It was really neat and we had a great day. While there we took in a movie and checked out the three floors of shops. We had a great meal at Tony Roma’s then headed back to Rochester.
On Saturday Jen caught her flight home and Evie & Duane caught their flight out to Minneapolis.
Unfortunately at this time the stem cell transplant is out of the question because his body did not react well to the steroids, which are mild compared to the drugs they use to harvest the stem cells.
He’ll be returning home to his family where he’ll be under hospice care.
Keep up with those prayers and thanks for all your support through CaringBridge! Our entire family is looking forward to this years Corvettes @ Carlisle benefit auction in which all proceeds will be going towards an Amyloid foundation to help research this disease.
We all still read your wonderful guest book entries & greatly appreciate your support during these difficult times – please keep them coming!!
Love,
Jen, Lance, Evie & Judy
Sunday, March 14, 2004 9:53 PM CST
The main doctor for the Stem Cell Transplant (Angela D.) went over various options with us earlier in the week. The Stem Cell Transplant is not an option at this point in time because they’ve found a large blood clot in his heart. Not to worry, it is still a possibility down the road (after the blood clot dissolves). They have him taking medicine that will help dissolve this blood clot that is over 3 centimeters in length. It should be gone within the next 6 weeks.
His spirits are high – he’s anxious to continue on the best possible course. We were planning a few goals & future events that he’d like to accomplish while we ate dinner the other night – so he’s still very much roaring to move forward! He’s been eating much better lately, ever since getting out of ICU. The doctors are upping the dosage of his current medication to help release some of his excess body fluids (he’s retaining a lot of fluid at the moment). His breathing has been much better lately and he’s also learning not to over extend himself by trying to walk past his current capabilities.
He’s currently on steroids and they seem to be giving him much more energy and stamina. He’ll continue with the steroids until the transplant time comes into place, hopefully in 6 weeks. Mayo Clinic is the place to be for Amyloid, our entire family feels confident!
He’ll have a re-evaluation in 6 weeks to see how the blood clot is coming along (or should I say see that it’s GONE!). We appreciate all of your prayers & guestbook entries – please keep them coming they really help put a smile on his face & keep him going! Jen (my sister) arrived yesterday to give me some relief and I’ll be leaving this Wed.
Dad will have some time in the future to do his own write up, this is not a promise, but he’ll try. Look for his return message within one week. Like I said before – no news is good news at this point. We’ll keep everyone informed as things progress. He’s been very focused on the appointments & up coming decisions that need to be made.
Again, we appreciate all of your support & prayers!
Lance & Judy
Sunday, March 7, 2004 8:55 PM CST
It sure does snow a lot out here!
As you can tell we made it to the Mayo Clinic, even with all this snow trying to stop us! My father is in the hospital at the moment (I’ll explain below) and he asked that my Mom & I (Lance) write you a message in order to keep you in the loop. Gary & Angie Stewart were kind enough to fly us out to the Mayo clinic in their personal plane making sure no germs were passed and making our lives much easier!
We arrived in Rochester, Minnesota on Wednesday after my father was released on Tuesday morning from the Holy Spirit hospital in Camp Hill, PA. Everything was going as planned, we were excited to get to the Mayo Clinic & sure enough we did…
When we first arrived we set up my hotel room & Gift of Life Transplant House (where my parents are staying) everything was going as planned. We all went to bed early knowing the following day was full of tests for my Dad.
The testing began on Thursday morning; they reevaluate to see how far the Amyloid has gone from the previous tests (about two weeks prior). After finishing up all the testing we grabbed a quick bite to eat then came back to my room which is about 2 miles from their home. Dad started complaining about his arm/hand tingling. He called Ira (the doctor/quarterback from PA) and he told him to hit the ER. Then my Mom got the number for Mayo Emergency area – I spoke to his Doctor at the Mayo Clinic - Angela (she’s one of the Amyloid doctors/experts here at the Mayo). She said it could be a stroke & to get him to the Emergency Room ASAP. So we packed the van & hit the ER – his arm turned blue/purple & had no pulse – so they had to do immediate surgery. Of course Dad was in high spirits & mom is hanging tough.
It ended up being a blood clot – the surgery took approximately 1 ½ hours. It was a long day for us all – it was about 2am when my Mom & I left the hospital. As we said good night to my groggy Dad, he was mumbling about how awesome the treatment was…
Overview – blood pressure is good, breathing is good & spirits are as high as ever! This place (Mayo Clinic) is undoubtedly the place to be, it’s honestly breathe taking when you walk around! It’s hands down the place to be when you are ill. We’ll keep you all posted – no news is good news at this point!
Dad still resides in the hospital and will remain there until he is in stable condition. We need your thoughts & prayers now more than ever – please take a moment & pray! We are hoping the Transplant Team will move forward with the proper procedure! Only time will tell. Please keep up your postings on the website, we print them out so Dad can read and enjoy your messages.
Special thanks go out to:
- Diane Vaughn & her fiancé James Spooner
- Sam Beacom & his wife
- Gary & Angie Stewart
- Ira Packman & Amy Murray
- Team of Surgeons at Mayo for a successful treatment
Saturday, February 28, 2004 3:55 PM CST
The update this week is being brought to you by Judy, Jen, and Lance:
Since the last post Chip has been having a restful week at Holy Spirit Hospital. Tuesday during a visit to the doctor his blood pressure dropped which brought in the EMT’s and a trip to the hospital. This is one way to make sure he gets his rest before heading to the Mayo on the 3rd.
All the best laid plans have been changed. Our good friends Gary and Angie Stewart will be flying us to Rochester Minnesota. The first crew will include Judy, Chip, and Lance. Jen will be flying out on the 13th through 19th. Then Evie will be joining Chip and Judy on the 24th.
Please keep saying those prayers, we need them now more than ever. Thanks again for all the support you have shown through CaringBridge. We will be printing all the guest book entries for Chip, so be sure to keep adding to them.
Sunday, February 22, 2004 1:10 PM CST
WHAT A WEEK!
My last message was written last Saturday in Rochester, MN. Judy and I flew home the next day. Plane travel is getting tough. Walking inclines is extremely difficult for me and the ramps from the planes really test me. Fortunately, I can usually fall into an empty seat at the gate to catch my breath. Walking flat surfaces isn’t so bad, as long as I keep it to the pace of a turtle! Anyway, I picked up a sore throat from the trip and Dr. Packman prescribed antibiotics just to be sure it doesn’t turn into something.
I called Dr. Rose, my Oncologist from Thomas Jefferson Hospital, on Monday and told him my good news from the Mayo Clinic. We cancelled my appointment Tuesday – no more oral chemo. He’ll continue working closely with Dr. Packman coordinating my medication as the blood work suggests.
We saw Dr. Packman and his nurse Amy for hugs on Monday. We had to bump up the diuretics to take off some added weight from the Mayo (fluids). Dr. Packman had expected more of a gain, so I felt better. I just can’t get used to my fat legs!
Best of all: Dr. Chris Yasenchak had set up a phone communication with Mike Lado who lives about two hours east of Carlisle. Mike went through the stem cell transplant nine months ago. We spoke for over an hour Sunday evening and Mike gave me a lot of reassurance regarding the transplant and his recovery. Like me, he also had heart, kidney and liver damage. To speak to someone who has been there, done that was exactly what I needed. He understood my loss of taste for coffee, beer and most foods. He went through the same thing and now enjoys what he ate and drank before the transplant.
That night, I hung up from the phone call with Mike and washed up and went to bed at midnight. Poor Judy: I couldn’t stop talking! Picture me: full of fluids, sore throat, wiped out from a week of tests and running around, and I couldn’t stop talking. When she finally politely asked me to “Shut up” at about 1:00 a.m. I did so. Problem was, I couldn’t find the “off switch” for my brain! I went on for over an hour pouring over the conversation with Mike and thinking about what my most major accomplishment in life still might be. I’m not ready to share that thought process and there isn’t enough room left after giving you this update and the next good news!
*****
GOOD NEWS!
Dr. Dispenzieri is my Amyloid doctor at the Mayo Clinic. She has a confidence about her which is contagious. I’m in great hands! The decision for the stem cell transplant was ultimately mine. Dr. Dispenzieri reviewed the tests and felt the transplant would work for me. Judy is behind it 100%. To me, I’d rather accept this option than win best-in-show at Pebble Beach! I want to have it and I understand the risk. Speaking with Mike Lado confirmed my decision.
Now comes the hurry up and wait time. Dr. Dispenzieri had me prepared for a four week wait before I’d return to Rochester. Three weeks of that period were for communications with my insurance company and getting approvals. For a guy who has wasted time already and is now feeling worse by the week, this time frame was hard to accept. Add to this some of the horror stories on the net about getting insurance to respond to this recommended procedure put me on edge. The articles recommended constant contact with the insurance company and sometimes inferred they were the enemy. Not a good image I had pictured.
I’ll lay out the week in brief.
Monday – Judy asks our controller, Harold Brandt, to make contact with our insurance company, Blue Cross. Harold goes through our agency where we’ve placed our corporate insurance for thirty years and asks for their help. I have also carried my personal insurance with this company for an even longer period of time and find them to be the best! My friends at the agency go to work.
Tuesday – Harold receives a call or two from the agency and around 5:00 gets word that I’ve been assigned a “case worker” and I can expect a call on Wednesday. Wow, moving ahead nicely!
Wednesday – Went for blood work and had a message from my “case worker” when I arrived home. Hooray! Called her back and went into her voice mail. Damn it, probably won’t hear from her for days. Phone rings in five minutes and it’s Dolly, my case worker. She brings me up to speed. She’s here to help and coordinate. She didn’t wait for me to call her back and started on her own. She spoke to a couple of people at the Mayo Clinic in Rochester, thinking that was where I’d been from info passed on by my insurance agency. In addition, she called my work number which has a recording that I’m not available and directing the caller to a couple of managers at work. It also gives my caringbridge.org information. She tried to pull up my site but used “elliottmiller” as patient name. She didn’t know a lot about me yet, but thought Blue Cross had not received a letter or evaluation from the Mayo Clinic yet. We spoke for quite a while and we both were comfortable that Blue Cross was doing all it could for now. She would continue to make contact with the people at the Mayo Clinic and I’d check in with Dr. Dispenzieri. I emailed Dr. Dispenzieri at 4:51 with my typical one-page letter. At 6:47 I received her reply: “I’ll check with the status of the letter. You can contact LeAnn tomorrow (--phone number--). I will also drop her a note now since she’s gone home by now. Take care and see you soon. AD” Brief, but tells me all I need to know for today. Can’t wait to speak to LeAnn in the morning and find out if “the letter” had been sent.
Thursday – I call LeAnn and reach her voice mail. Something like “Hi, you’ve reached LeAnn; I’ll be out of the office all week, returning on February 23rd.” I leave her a quick message indicating I hope all will be resolved by the time she returns and left my name and asked her to check with Dr. Dispenzieri. I call Dolly (Blue Cross) and she indicates I shouldn’t worry and she is on top of things. She has a confirmation that no letter was sent, but feels comfortable with a couple of the people she is conversing with at the Mayo. I can’t put it out of my mind so place a call to Dr. Dispenzieri’s medical secretary. She takes the information and says she’ll pass it on to Dr. Dispenzieri. No call backs. At 8:27 I email Dr. Dispenzieri. Nice, brief for me – only three paragraphs. We have the attention of the insurance company, let’s move ahead!
Friday – 8:00 a.m. – Email from Dr. Dispenzieri: “Someone else in the office should be able to help. I will call once someone comes in.” 2:30 Email from me: “Thanks. Its 2:30 my time and just got home from a doctor appointment and lab work. No message yet. Chip” I can be brief, at times! Only minutes later from Dr. Dispenzieri: “They were discussing you this a.m. I haven’t heard yet but Michelle …. (--phone number--) has been working on your case with your case manager. Her line is busy now, and I need to go see patients. I’ll keep checking.” I’m happy and sad. It seems to be moving along, but the clock is ticking towards the weekend. It’ll be tough not being able to do much for the next 48 hours.
AND THEN IT HAPPENS! The phone rings at 3:45 Friday afternoon. “Carol from the Mayo Clinic in Rochester.” Carol, my new best friend! Tell me the good news. “I’ve been talking with Dolly (Blue Cross) and it looks like everything is falling into place. Can you come to the Mayo Clinic on March 1st or March 4th? We are booked pretty full on the 1st and would prefer the 4th.” Sure, my bags are packed and I’m ready to go! Let’s book me in for the 4th. “That’s great; this is for the evaluation procedures.” No, way, I had the evaluation done a week ago – just returned last Sunday. What’s this all about? Is there any way I can come out for the additional testing and evaluation and stay in Rochester? I don’t want to risk taking any more flights and once I’m there I don’t want to go anywhere until I get my transplant. I know, I sound like a 61 year old baby! “Mr. Miller, the tests are just to bring us up to date so we can start your procedure the following week.” I love you! “I’ve never been told that by someone I don’t know before.” Sorry, I’ve been saying that a lot lately and it came naturally when I realized it was super good news you were giving me. “Works for me.” Not only did Carol give me this awesome news just before the weekend, she also told me the tentative schedule on the transplant. She’ll set it all up and confirm next week.
Talk about highs and lows. I’d not been feeling too well before the call. All energy had to be sucked out of me during my conversation with Carol. And yet I had to call so many people with the good news: Lisa, Diane and John from work. Put it on the speaker for everyone. Our kids: Evie, Jenny and Lance. Bill, my partner. Ellen, my sister. Randy, my brother. Dolly, Blue Cross. Dr. Packman and Amy. Paul, Kevin, Bob, Rick and more. I’m never short on words, but had to be. Judy was on one phone, me the other. By 10:00 I was shot. I told most of them I’d call back over the weekend and as of now (noon on Sunday), I’ve made no more calls. It’s all I can do to write this message. In an hour I’ll have my feet up (diuretics at work) and watching NASCAR at the Rock.
To those I didn’t call personally, please understand. I really care about you all, but I’m weak. I need my quiet time. I need to be at my best in the upcoming weeks and months. I’m doing it for many reasons – you are one – I’m coming through this and will find time to talk and socialize. Mike Lado says my taste will come back and I must prove him right.
Thanks to all of you. Your thoughts and prayers have worked. Please keep them coming. I’ll put another message up next Saturday or Sunday. Monday, the 1st we’ll be in the car heading west to Rochester, MN. I doubt we’ll be back before May 1st, but both Judy and I will keep you up-to-date through caringbridge.org – I don’t know what I’d do without this web page! 14,500 visits since posting our first message two months ago. WOW!
Dear Lord, thanks for your guidance and love.
Saturday, February 14, 2004 1:08 PM CST
HAPPY VALENTINE’S DAY!
*****
MESSAGE FROM THE MAYO!
It’s Saturday and I can’t wait to give you this report. After four days of evaluation, testing and conferring, I’m happy to be able to pass on some good news. The kind people at the Mayo Clinic have offered to perform a stem cell transplant on me. It most likely will be a modified (from full force) plan to keep my risk of death during the procedure to a realistic percentage. We’re looking at 25% or less which converts to 75% plus chance of pulling through. The pulling through is key – it should lead to a life expectancy better than it would be without the stem cell transplant. This is a rare disease with great unknowns, so it’s impossible to forecast the odds and exactly what to expect. I truly believe this is the best shot I’ll get.
This is the time and place to have it done. The quicker the better – I know I get weaker by the week (a little play on words). Most likely I’ll return to Rochester in about four weeks for the transplant.
The reception here is unreal! The Mayo Clinic is far and away the nicest medical facility I can imagine. Most of our time has been spent in their newest building called the Gonda Building. It opened in October, 2001. Walking into the lobby I can only compare it to walking into a casino. You know, all marble and appointments second to none. Breathtaking! Talk about generosity, a husband and wife by the names of Leslie and Susan Gonda contributed the money to build the first ten stories of the building – reported to be about $800,000,000! That’s a tick under one billion dollars! And it shows! Not a compromise anywhere. Beauty which can be enjoyed by the wealthiest and poorest patients alike without the feeling they are paying for it. It’s my understanding that the couple were both treated at the Mayo Clinic and were so moved they returned their good vibrations in a way few of us can even comprehend. I’m so grateful to be able to have seen this facility, much less be treated here.
Downtown Rochester, MN is a beautiful city, mainly due to the Mayo Clinic and IBM. The friendliness of the midwestern culture is in evidence every time we meet someone. Friendly, efficient employees of the Mayo Clinic are there to make every patient feel welcome. The facility is beautifully engineered and easy to find your way around. The “subway” is something to behold. Shops, restaurants, art displays and even a Barnes and Noble book store!
Dr. Chris Yasenchak and his wife Coleen Stiles not only laid the groundwork for my visit, but also kept in touch daily during our visit. Dr. Angela Dispenzieri is my doctor specializing in Amyloidosis. Judy and I felt very comfortable with her and I’m happy to have my treatment under her command.
We also met with Beverly Taylor in their Social Services department. I know we’ll spend time with Bev in the future – she can help regarding endowments. She directed us to the Gift of Life Transplant House – a facility that has 48 guestrooms to house transplant donors and recipients and their caretakers. Each donor and his/her caretaker can rent one room; same for each donor. In my case, I’m the donor and the recipient so Judy and I qualify for a room. It is as clean as the inside of the hospital, but is a large residential building. Neither TV’s nor food are allowed in the rooms. Food must be prepared and consumed in the kitchen and dining areas. It’ll be something new not having a TV in our room but we understand their reasoning – they want us to mix with other patients. I think this is the biggest reason we chose this facility to call home for the five to eight weeks we’ll be there. The support from other transplant patients and caretakers will be of great value to Judy and me. I can assure you we’ll take our turns at supporting others. My optimism is enhanced by the way this whole package has fallen into place and gives me great confidence in my future.
Thank you, dear Lord.
*****
HOW WE ARE DOING
Judy is handling this very well. We are together 24/7. I’m unable to lift anything over about 10 pounds and moving baggage at airports is nearly impossible. She’s doing a great job and when we need help, we get it. When I need to stop to catch my breath, she sits and shows understanding.
Thanks to the support of many friends and family who understand her special needs at this time, she has shown the strength and courage to take charge of any situation. I’m truly impressed with the strength she shows when it is pressed into service. Family and friends know who you are – thanks! Dr. Packman and “nurse” Amy are her main support unit. They know the real “whys” and “hows” and push the right buttons. It really works for both Judy and me.
I’m doing fine. Positive Mental Attitude. Complete belief we are doing what we can with what we have to work with. God has been doing his thing in leading our team of “Angels”. The Angels have taken so much of the load off Judy and myself. There is no denying my breathing is becoming more restricted and it’s a delicate balance expelling retained fluids while not being a little dizzy all the time. Twice a week lab work helps, but the balance is a close one. I know things will not get well on their own and am extremely relieved the stem cell transplant is near. I’ve had plans and goals if I wasn’t offered the transplant – all short time that included Amelia Island and Sebring. It now appears they will be stricken from my Winter ’04 list. My ’63 Corvette will still be sent to Amelia Island, but I’ll have to find someone to tape Sebring as it appears on SPEED Channel to watch at the Transplant House. This is all part of the master plan with the intention of going back to attending all events next winter. I have hopes of being through my transplant treatment by Spring Carlisle and seeing many of you there. The Meguiars’ Award and Bloomington Gold are still in ink in my appointment book. By then I hope to be stronger than I am today and have the big treatment in my rearview mirrors.
*****
SPEEDWEEKS ’04
I miss you – all of you in Daytona this weekend. Too many great friends to list. Many of you have heard from me by now. I’m putting you all on notice: Judy and I will be using our seats next year! We’re also picking up the tab at Buca d’Pepa’s. These visions of the future are so important. The things we take for granted are more precious when we realize they aren’t here forever. Last night someone asked me what food I miss the most – without hesitation I replied “pizza”. When your daily sodium intake is limited to 2000 mg a day, there is no room for pizza. I love that new commercial by Pizza Hut showing four types of pizza in one tray. My sight goes to the bottom right: a square with pepperoni. I’m thinking about protesting that ad – I drool every time I see it. Help me here, if you don’t have any restrictions, enjoy a pizza for me!
We are checking out of the Raddison tomorrow morning and will be flying home all afternoon. A friend is taping the Daytona 500 and we are viewing it on Monday. No jokes, no emails – I don’t want to know who won until the end of the tape! But boy do we miss being there in person. If that son-of-a-gun Jarrett wins the crowd will be only half as loud – Judy’s not there this year, Dale.
*****
LIFE IS GOOD! UPDATE IN ABOUT SEVEN DAYS.
Friday, February 6, 2004 11:21 PM CST
STARTED ON THURSDAY!
Well, guys and girls, I’m totally blown away. It’s midnight Thursday evening and I’m checking my site for new messages. I’ve not shed a tear since my diagnosis, but sometimes start “watering up” when I read some of your messages. Some from people I haven’t seen for a quarter of a century. You all have your memories of which I’m reminded. I’m glad to have played a part in your lives. You have to know this is a two-way street. Your words bring back so many good times. I’d be crazy to pick out one or two of your messages. They all count and add up to an unreal ride that I’ve been on for sixty-one years!
To the people I can talk to my message is always distinct: this period of adjustment is one of the happiest times in my life. God has given me a wake-up call and what I do with it is important. He didn’t take me yet, and in my most recent thinking I become more and more optimistic that I will have additional, precious time. This is the important thing, in those sixty-one years I’ve lived a story book life. I’ve shared my feelings for my family and friends, but it is even more than that. My business success has allowed me to do the things I wanted to do and do them my way.
Never was I tempted to hurt anyone and I’m confident of a positive reception when the time comes to meet my Maker. Watching the news this week I couldn’t help but question how a human being could go so far astray as to kidnap a twelve year old girl with obvious deranged intentions. (Added Friday morning – the news now reports finding the girl dead – too tragic to comprehend). How will this degenerate have the courage to close his eyes the last time? The news is too full of all these terrible happenings, but we all know the news has to be reported. The news that isn’t reported are the little good deeds done every day by every one of us. They are not sensational enough to get onto TV, but they add up to what life is all about. Self pride. Knowing you’ve done the right thing. These deeds mount up daily, then yearly. After time, good deeds become simple reactions. They allow us to sleep well. They gain love and respect. They set the example for others. They become our reputation, then our legacy.
Not one of you who have left a message on our guest book have cracked a joke or made light of me or caringbridge.org. Your sympathetic and inspiring messages are good deeds which have encouraged others to express themselves. I believe more people come back to visit our page to read the guest book than to read my messages.
Anyway, this window of opportunity for me is more than an important time in my life. Now, it is my life! God gave it to me and I’ll make the most of it. Just don’t need all this snow! Sorry, I give thanks for everything – the heavy snow this winter is my reward for missing it the last nine years when Judy and I vacationed in Florida. It is beautiful, but so slippery – and what it does to the cars – stop it, I love it! Thank you, Lord, for every day. I’ll never again take a day for granted.
*****
THE CROSS I CARRY
It’s made of pewter. It’s about 1” wide and 1-1/2” long. It has an inscription. Its message is most important to me during this special time in my life. It reads: “GOD, grant me the Serenity to accept the things I cannot change. The Courage to change the things I can. And the Wisdom to know the difference. AMEN.”
Friends, this little cross is one of my most prized possessions. It resides in my right hand pants pocket, every day. It will be in my pocket when my final day arrives and will accompany me to my grave. It’s that special. The words are ones that I have a hard time memorizing, so I must reference the cross often. It’s the message that I understand and find comfort with. It will be most important to me next week as I learn what medical treatment I can have, and what treatment I choose to have. I’ll rely on this message heavily.
The cross was sent to me by Bob and Bridget Tomczak right around the time I went to Boston for my evaluation. Bob and Bridget had it blessed by the Pope while having their marriage blessed a year or two ago. No further words can describe how special it is to me – but you know!
*****
“POSTCARDS” RECEIVED FROM MY NCRS FRIENDS AT ORLANDO
Today I received this “little” package in the mail. It contained three “postcards”. I suppose the U.S. Postal Service limits a postcard to about 4” by 6”. They would have needed about 100 postcards to get all the signatures and wishes from all the people who signed my cards. The cards they sent measured 24” by 36” and they sent three! I didn’t count the signatures, but am sure there are 100+. The posters were special made for me with the art of the event as the center focus. I can’t tell you how special I feel receiving this incredible outpouring of kindness from so many friends. Special thanks go to Ed Augustine and the whole Florida Chapter. I can’t thank each individual person, but know some of the signers will read this and pass on my appreciation to the others. I indicated in a recent message I have NCRS/Orlando on my list for next year. In person, look for the guy with the biggest smile! I want a hug from each of you!
*****
FROM ACROSS THE POND
How about this saying that Steve Havelock from the United Kingdom saw engraved on a stone in a garden years ago: “IF YOU KEEP YOUR FACE TOWARDS THE SUNSHINE, THE SHADOWS WILL ALWAYS FALL BEHIND YOU.” Works for me!
*****
WHO WOULD GIVE AWAY A 1957 CORVETTE?
Easy: Judy and Chip Miller. There will be upcoming press releases and information on Carlisle Events’ web site: carsatcarlisle.com. I’ll most likely expound on the details in an upcoming message on caringbridge. The intent is simple. Judy and I proposed a significant donation to the Benefit Auction at Corvettes at Carlisle in response to the company’s decision to support Amyloid research and awareness. All our children agree, it’s a great thing to do. I knew it had to be one of my Corvettes and went through a lengthy selection process. The ’57 is one of my favorites. It’s a very early 4-speed car and a very early positraction car. Both are original as produced in this car at the factory. Same with the motor – the base motor making 220 horsepower from the newly introduced 283 cubic inch motor. It’s Aztec Copper with beige inserts. I’m the third owner and the car is as well documented as any ’57, anywhere. In my opinion, the ’56 and ’57 Corvettes are the best looking Corvettes of all time. It was the first new Corvette I ever noticed and was bound and determined to have one, some day.
I’m serious in helping the proper organizations in their endeavors to find a cure, educate the public and help Amyloid sufferers though communication, support and hope. I’d also expect a discretionary contribution to be made to caringbridge.org – anyone reading this message on this site knows why. It has given me the tool to communicate with over 10,000 people in a little over one month!
I feel the ’57 Corvette will bring over $75,000 and could inspire others to contribute heavily to this cause. It will be a big responsibility to direct the funds to the best recipients. This will lay heavily with the management team at Carlisle Events. I’ll have some input, but it will be a team effort and decision.
We are proud of our past efforts of our Benefit Auction. We’ve donated in excess of $70,000 which has benefited American Cancer Society and other recipients. This is the next step to make a real difference. Perhaps when I find myself a little less wordy on one of my weekly messages, I’ll include the official Carlisle Events press release.
*****
HEMMINGS MOTOR NEWS
I’m honored to be featured in a full-page article entitled “MR. CORVETTE – CHIP MILLER DIAGNOSED WITH RARE DISORDER”. It’s on page 147 of Hemmings’ March, 2004 issue. It gives a great history of Carlisle and offers the readers an overview of Amyloidosis. Again, public awareness is necessary for this very rare and little understood disease. It is in Hemmings’ 50th birthday edition. Hemmings is probably the most read magazine in the collector car hobby, and, at fifty years of age, must be the longest running publication. Just think how small the hobby must have been in 1954! Again, I pass on my appreciation for all the fine words from my friends at HEMMINGS MOTOR NEWS. If you don’t subscribe and are curious, you can pick up this edition at most large newsstands and book stores.
*****
FINALLY – THE LAST ITEM – WE LEAVE MONDAY FOR THE MAYO CLINIC
There has been an outpouring of support for my decision to get an opinion from the Mayo Clinic in Rochester, MN. I love the people at the Boston Medical Center, but it’s no new news to them or anyone else who has read my past messages on this web site that I’m not ready to accept not being treated by the stem cell transplant which both hospitals are equally capable of doing. I know my ticker has been impacted by the Amyloidosis and will be put to a real test with the stem cell transplant treatment. I’m willing to accept heavy risk in this endeavor, but did not have this option in Boston. I’ve followed their suggested treatment for the last three weeks and have completed my first twenty one days of oral chemo. I know it has succeeded in lowering my white blood count as they wanted. The next two weeks I’m off the chemo – good thing, I should feel better when being evaluated at the Mayo Clinic. The Boston plan has me going back to the chemo in two weeks and then repeating that cycle for three times, total. In my mind, I feel my stem cells (the good guys) will be mostly destroyed at this point and will preclude using my own stem cells for a future transplant. This may not be completely accurate, but it is my fear. This is why I feel it is imperative to get the second opinion now. I’ll not go any further on my personal thinking, but am anxious to see the results and recommendations from my Mayo Clinic evaluation.
I’m doubtful I’ll be able to report to you the results in my next message – I’m taking my computer to Rochester, MN and expect to post my next message on or about next Saturday. At least I will be able to share some of my experiences and thoughts. Most important, I’ll be able to read new guest book messages. If I need more inspiration, I’ll reread the older messages. Believe me, I read them all multiple times. Keep them coming! Thanks.
LIFE IS GOOD!
Sunday, February 1, 2004 4:09 PM CST
INVITED GUEST AUTHORS THIS WEEK
This past week I’ve received many more messages and cards – thanks to all! Some of the messages contained meaningful sayings. I’ll pass many of them on as the right opportunities present themselves.
This week tested my spirits a few times, but I was able to rebound quickly each time. The highlights of my week surrounded Judy’s birthday on January 29th. She always checks my messages before they are posted so I won’t even attempt to tell you her age! Bob and Bridget Tomczak made a surprise (for Judy) stop on their trip from Chicago to Florida – not exactly on their direct Mapquest route! We have celebrated Judy’s birthday with Bob and Bridget for many years in Florida and just didn’t want to monkey with tradition. I wasn’t feeling that well when we left for the Boiling Springs Tavern, but when we were seated in front of the blazing fireplace and Kevin (our waiter) came to offer the establishment’s special treatment my mind went to how wonderful life can be. The meal was superb and the company was even better.
I was unable to attend the NCRS meet in Orlando where I’m usually “helped” by Shirley Goldsmith in finding the right jewelry for Judy’s birthday. This year I ventured into Mountz Jewelers in Carlisle with Judy and we came up with what I think is an ultimate gift, given her special birthday and my bout with the dreaded Amyloid. It’s a past, present and future ring – ask Judy to see it when you see her. Sure put a smile on both of our faces!
The kids and grandkids are back. Spending more time here because of my illness and the many birthdays. Jessica, our oldest granddaughter, turns sweet little sixteen in a week. I gave Judy a VW beetle (turbocharged) in 1999. It’s a great little car and might have 10,000 miles on it at most. Lance and I had high performance tires and bigger custom wheels installed right after Judy got it. Lowered it a little, also. Really a neat car. It is now Jessica’s! She’s one happy cruiser!
Finally, I missed the wettest Rolex 24 Hour race at Daytona in many a year. I missed being with my friends in Daytona, but the weather was best seen on TV and not at the track. Jay and Joe Policastro (father/son racers who have been high on my best friends list for years) co-drove a Porsche to first in class and second overall. Friends, this is a major accomplishment! They’ll have to wait for my hugs, but know they are coming! Way to go!
I don’t want to take up more room now because I want to give Judy and each of our children some space to offer their messages. Their friends are our friends, and I thank so many for visiting and adding best wishes.
I’ll be back again before leaving for the Mayo Clinic in Rochester, MN on the 9th.
Life is good!
*****
“Faithless is he that says farewell when the road darkens.”
This was passed to me by one of my favorite angels, Amy Murray. Amy is Dr. Ira Packman’s nurse. Judy and I see her twice a week and she is one of the dearest people we know. When I walk into Dr. Packman’s office, I feel like I’m visiting family. So many of you have read my earlier message about the “Angels” team of which Ira is the quarterback. Shortly thereafter he put a very special message on my guestbook. We talk every day and he is first string, all the way.
*****
MESSAGE FROM DAUGHTERS EVIE MENGES AND JEN GUNDERSEN
Thank you for being there when we need your support.
Thank you for being there by our side.
Thank you for reminding us of everyone’s love,
So True.
Thank you,
Most of all for being YOU.
We have been so touched by the show of love and support on Caring Bridge. This has been a very tough time in our lives, but your support and prayers have helped us to cope. Please know that we do read each and every message that is posted; they help us get through each and every day. It is so touching to be able to see how our Dad has had such a positive effect on so many people’s lives. Please keep us in your prayers and keep posting those messages!
Love to all,
Evie and Jen
*****
MESSAGE FROM LANCE
I’ve asked my father to write a short note for all of us (the family) but he insisted we write our own appreciation messages. So here goes: Thank you, thank you, thank you! As many of you know Silver (his nickname from me) is my best friend and father. I know how much your messages and prayers mean to him and to our entire family. We all appreciate your love & support!
I read the guest book daily, it brings tears to my eyes and I wanted to thank every one of you for your prayers, thoughts and support. I know how much it means to my father, mother, sisters & me. It helps Silver wake up with a smile and gives him that extra bit of energy knowing we’re all out there supporting him.
We’re keeping the faith and most of all; my Dad is in high spirits! You can hear it from the “horse’s mouth” – he looks good & is ready to defeat this difficult stage in his life with my Mom right by his side!
Again, thank you for your help and support through these difficult times.
Love,
Lance
*****
MESSAGE FROM JUDY
What can I say that hasn’t been said already? In these tough times, it is all of your love, concern, and caring that is seeing us through. Please keep it up. God Bless you all. We love you. Judy
*****
Here’s a poem Lance had written and framed for Judy for her birthday. The poet is Monique Costa and her web site is: http://lepoemeshoppe.com. You can see from her message above, Judy is not as wordy as I am. But she gets her point across. The poem is beautiful and accurately describes how special Judy is.
MOM
Words could never express,
Just what you mean to me.
How every day you give of yourself
So unselfishly.
Childhood memories like yesterday
When Dad and I would race,
And you would watch and cheer us on,
A memory I’ll never erase.
On your birthday, looking back
I hope that you will see,
You should be proud of the man I’ve become,
The gentleman you raised me to be.
You’ve dedicated your life
To our family through the years.
And you have always been there,
Through the laughter and the tears.
I depend on you like the ocean,
Always constant, always there.
I hope you know you can depend on me,
Through this time of fear.
You nurture and love
All of the people in your life,
That is why you’re such wonderful mother,
Grandmother and wife.
Happy 60th Birthday, Mom
I love you,
Lance
*****
I’m speechless, finally. I’ll keep up the fight, you keep up the prayers. Thanks.
Saturday, January 24, 2004 10:02 AM CST
GOING TO THE MAYO CLINIC!
We received our call this week inviting us to the Mayo Clinic in Rochester, MN for evaluation to see what treatment they will suggest – of course my hope is the stem cell transplant. Judy and I leave on February 9 and return on February 15.
This time I travel knowing someone on the other end. It’s always good to have an introduction and someone to pave the way. This time it’s Dr. Chris Yasenchak, a young cancer doctor at the Mayo Clinic who married an ex-employee of mine, Colleen Stiles. Colleen developed a lasting friendship with Lisa Leathery of Carlisle Events. When they spoke two weeks ago, Colleen suggested she and her husband could help arrange the evaluation at the Mayo Clinic. This was right after I knew I wouldn’t be getting the stem cell transplant in Boston (at least now).
That offer was so superb! I spoke to Dr. Yasenchak shortly thereafter. He wasted no time getting my records from Boston and talking to the appropriate doctors at the Mayo Clinic. He ordered my bone marrow sample sent to the Mayo so I won’t have to go through that test in February. All other tests will be repeated so results are up-to-date. That makes me happy because of my weight loss and probability I’m in much better shape than when I was in Boston. I’ve adhered to my low sodium diet and have started taking nutritional supplements. Dr. Yasenchak assures me Dr. Angela Dispenzieri is the perfect match for my evaluation. I’m anxious to meet her.
Colleen made hotel suggestions right near the Mayo Clinic. Judy and I will be staying at the only four diamond hotel in Rochester, the Radisson Plaza Hotel. The Radisson connects with the Mayo Clinic by a “sky walk”. I sure hope it’s heated!
Anyway, we are nothing but positive about this trip. I’ll put my best foot forward and know I’ve done all I can. I’m sure I’ll take my computer on this trip so will be able to stay on my one-week Friday or Saturday updates.
*****
AN EVENING OF POEMS
I awoke at 4:00 Tuesday morning. I’m sorry, but I’m telling you the truth: I was smiling! I had one of our two cats up against my legs and Judy by my side. But there is nothing new about this – this is as close to heaven it gets on earth and I experience it each and every night. And I smile!
The smile was from the words that started to go through my head. I was composing a poem – or something that might be construed as a poem. I know where the inspiration came from: Ann Walko. Ann has a very special son, John, who I’ve learned to love as a brother. He’s president of Corvette Club of Western Pennsylvania. The first poem in her book “Each Day a Celebration” is entitled “Now that I am 92”. The book was published a couple of years ago. I’ve never met her and I still hope to. Her poems almost all put a smile on my face. She also is my inspiration because some of her poems are very brief and some don’t have any rhyme. Frankly, hers is the only book of poems I ever wanted to read from cover to cover.
I’m sure Ann would be proud to allow me to share that first poem in her book entitled “NOW THAT I AM NINETY-TWO”.
Each step is a halt,
My vision dim,
Each reach a consternation.
Still,
Despite the shift in gear,
Each day a celebration.
I’d say there are about 100 poems and light verses in her book which was published in 2000. It’s published by Anderson Publishing in Pittsburgh.
So, Ann, I hope you can appreciate how much I was encouraged by your writings. I read your book months ago and just this week came up with a couple of poems (light verses) of my own. This is the kid who sketched cars in Minnie Miller’s high school English class.
My first poem is the one with the words that wouldn’t go away. Then I started a second poem. At that point I got out of bed and grabbed a pencil and paper. Within one-half hour I was back in bed asleep – yes, smiling! Here’s what I wrote on the paper:
---
LIGHT AT THE END OF THE TUNNEL
The light,
The light,
It shines so bright.
I shout,
I shout,
Don’t go out!
---
THE DOOR’S OPEN A CRACK
A sliver of light,
A wisp of air,
It’s only a crack,
But it’s there.
I’ll take it.
Where will it lead?
I’ll follow HIS footsteps.
And respect HIS plans.
---
MY DREAMS
As a child I dreamed of cars.
At 15 I owned one.
As a teenager I dreamed of Judy.
At 24 I married her.
My dreams expanded as the family grew.
Add children and grandchildren.
All are important.
All are near.
Now I dream to live
And live to dream.
*****
NCRS ORLANDO
Just a quick hello to all my Corvette buddies attending the NCRS Orlando meet this weekend – wish I could be with you and hope you enjoy a great show. I’m working hard to be able to be with you all again at next years show.
*****
BOB GOLD
Many people reading this know Bob Gold was my best friend. He was only able to enjoy 53 years here and passed on July 28, 1999. He was extra special because for the last five or ten years of his life we always had a special look when we parted company – would we see each other again? He had childhood diabetes and a very weak heart and had ten years before received a donor kidney from his brother, Andrew. And yet he had a power about him. Having a bum ticker in me, I now know a little of how he felt. He never complained. He was always there for me and his family and friends.
Bob always preached that GOD’S ultimate gifts were music and the flowers. Not things you had to save up for weeks to buy. Things that were free. Turn on a radio and listen. Take a look out the window at a bed of flowers. As I look out my window today the flowers have been replaced by an equally spectacular sight: fresh laid snow. Bob knew how to get the full twenty-four hours out of a day.
I’ve thought of him daily since his passing. I look at his picture – his eyes are focused on me. I need him more now, and appreciate what he prepared me for. He never felt sorry for himself. He never cried for himself (that I know of). He had total faith in GOD and gave himself to our LORD. Bob was my mentor in these areas.
After my last message I started receiving messages from his entire family. They all know how special he was and is to me – now that I have their attention I wanted to acknowledge my very special friend.
*****
NEXT WEEK
I always get myself into trouble here. I know I want to keep each message brief enough to allow you to visit without spending too much time. And yet, there always seems to be more things to pass on to you.
Next week I have some words of inspiration which were sent my way by very special people. I hope to make an announcement about a very special donation to a very special cause. And more. Stay tuned – next Friday or Saturday it will be up.
Until then, thanks again for your visits to this site, your entries, your prayers and your cards. As you have all discovered, I’m not writing or calling back. Rest assured I read every word of every entry and every card. I smile and think of you. I just can’t take the time to acknowledge.
If this is your first visit, you can read my past entries by clicking on the blue book immediately below. Clicking on the yellow book allows you to read messages from past visitors to this site and also is the place to add your own message.
Friday, January 16, 2004 9:49 PM CST
COULDN’T GRAB THE GOLD RING - ON MY FIRST ATTEMPT!
*****
My last message indicated I’d post this message today or yesterday. Here it is 9:15 pm and I’m starting it! I’ve spent a lifetime perfecting the art of procrastination. Sure, you say “he’s so hard on himself – look what he’s going through”. Know what, this time I’ll cut myself some slack and agree.
This week I’ll not get into the day-by-day, person-by-person, experience-by-experience I did last message.
What is important as all of you have read in my past messages is that my sights were set on the stem cell transplant program. I went a little negative when I described how bad I must have looked to Dr. Falk, the cardiologist in Boston. I felt that if I couldn’t revisit with him and leave him with a better impression, there would be little chance of him recommending the stem cell transplant program. Finally, I wrote I’d be plotting last Sunday and Monday to get his attention in hopes of obtaining the desired treatment.
I did what I had to do. Letters were faxed to Dr. Falk, Dr. Skinner and Dr. Nordlinger on Sunday evening. I offered to present myself with my new weight loss (finally stabilized at 156-157#) and the desire for a new echocardiogram and interview with Dr. Falk on Tuesday or Wednesday. I was ready to fly to Boston either day – their decision day was supposed to be Friday (today). No response came on Monday. Tuesday’s clock was ticking when Dr. Ira Packman (my quarterback on our new team – the Angels – makes him the angel in charge, get it) decided it best to get our own echocardiogram right here in Harrisburg. I had that done Tuesday evening. Unfortunately, it didn’t add much punch to our already weak case. Thursday (yesterday) morning I met with a great cardiologist here in Carlisle at 7:30 am. He confirmed Dr. Falk’s opinion that my heart was not strong enough for the stem cell transplant. Let’s amend that to the odds were not good.
Phone calls were made to Boston by Dr. Packman and Dr. Rose (my oncologist from Philadelphia who really got the ball rolling for my trip to Boston) on Thursday to determine how to proceed. Dr. Nordlinger (Boston) replied almost immediately with a preliminary report from Dr. Seldin (Boston hematologist). His report praised my weight reduction and my willingness to do just about anything to get into the stem cell transplant program. All the positives could not negate my heart problem. However, the last paragraph of his report gave us the necessary optimism and direction to move ahead: “I would recommend that he begin continuous daily oral melphalan (chemotherapy) according to our published protocol, and also work closely with a cardiologist to try to manage his CHF (congestive heart failure) much more aggressively. He should have a re-evaluation in about 3 months or after abut 300 mg melphalan……….. If through chemotherapy and medical management his cardiac function improves, we would consider intensifying his treatment with IV therapy and stem cell transplant.”
There it is – the crack in the door. The light glowing at the end of the tunnel.
I STARTED MY ORAL CHEMO TODAY!
Chip
*****
I told you who the quarterback of the “Angels” is – Dr. Ira Packman. He’ll spearhead our mission. Judy and I are arm-in-arm in our endeavor. The doctors who Dr. Packman and Dr. Paul Noble have assembled are the best in their fields, qualifying them to be first string players on the “Angels”. If they can’t get the job done, no one else could have. How about our “Angel” cheerleaders? At this point over 7000 of you have visited this website. Some the dearest of friends; some I’ve never met. You are universal in your support and incredibly caring people. Wait, I’ve missed the most important member of the “Angels”. He was, is, and always will be the play maker. The one all “Angels” report to. In GOD’S hands we all perform. HIS WILL is our will. HE points the way. My path will lead to HIM. My journey ends when HE’S ready for it to end.
*****
As this current treatment settles into a routine, I’m hoping there can be limited travel in my therapy – naturally to warm destinations. I have so many things to be thankful for – especially this time of transition. I’d like to qualify that in my next entry. Until further notice, I’ll be writing my entries once a week and posting them Friday or Saturday of each week.
*****
Finally, thanks for all your posted messages. They really work. Not only for me, but for most visitors to this site. I read them over and over again. I just can’t get over the outpouring of love and respect. I’m truly humbled. Please know I think of you each time I read your message. I imagine your face. I smile.
Saturday, January 10, 2004 7:28 PM CST
BACK FROM BOSTON - MAGIC DIET ALLOWS ME TO DROP 15.5 POUNDS IN LESS THAN A WEEK - STILL SOME CHALLENGES AHEAD
*****
I warn you – the following day by day review of my trip to Boston is lengthy. It has some humor, it’s upbeat and documents my love of the people who are helping me. If your visit is intended to be brief, please fast forward to the conclusion of this journal entry. Thanks.
*****
I feel like we’ve been on a whirlwind! Judy and I departed for Boston University Medical Center (Amyloid Treatment and Research Center) on Sunday, January 4th.
My evaluation started at 8:30 Monday morning. I first met Natasha, who was responsible for my schedule and making sure all the doctors saw me and I in turn never got lost finding them. She set the stage for the next 72 hours. She has a warm smile, true compassion and great efficiency. No telling how much blood I gave over that three day period! My Monday was scheduled for blood work, vitals, chest x-ray, start of 24-hour urine test, Dr. Nordlinger consultation (I’ll devote another paragraph to her), Julie and Merideth with photos and log-in, bone marrow biopsy and finally PFT's (pulmonary function tests).
All went fine at first. Over a dozen vials of blood were drawn with much less discomfort and greater speed than two vials here in Harrisburg yesterday – this was consistent through all “donations” I gave in that lab. What a couple of sweethearts (especially the lady running the lab). Chest x-ray: no big deal. This was probably the 7th or 8th in the last three months. The one that drove me crazy was the skeletal survey performed last week in Camp Hill – took 2½ hours and they x-rayed every joint and bone in my body. The highlight of my morning was meeting Dr. Skinner who called me during her vacation and set up this immediate evaluation. She’s the director of the program and the program is in great hands!
I guess things were going too well! I took what I call a “chill pill” in preparation for the bone marrow biopsy. This was the only unpleasant test. Prior to pushing a needle into your butt bone, they numb the area with a pain killer. Fine, not a big deal. The problem was, the first two entries into my bone resulted in extracting blood, but no marrow. Another entry was made an inch or two away. Now friends, if you are weak in the tummy now, picture this wimp who has really not favored pain and trauma all his life. Anyway, the success was they drew the bone marrow they needed. The failure was when I arose to get off the table I passed out. Went to a crazy never-never land I’ve never visited before. I remember being totally at peace with the situation, while those around me (Judy especially) were the ones with concern.
This landed me a trip to the ER where they had shut off all admissions for two hours (flu and accidents were overwhelming). I was already in the hospital, so they made a place for me. After determining all vitals were back to normal, I was allowed to rest on my gurney for 4-5 hours before a room was available to me. My roommate was an elderly man who had been there for twelve days already. He seldom stopped coughing a very deep and nasty cough. I’m asking myself “what am I doing here”. Okay, things can only get better, right? Wrong.
Sleep came with difficulty. They had to leave our door open and the lights bothered me. Worse yet was my pain in the ass. Which one? Both! Sure enough I fell asleep around 11:30. Four hours of glorious sleep and WHAM! I thought it was a dream – but it turned out to be more a nightmare. I opened my eyes to find my roommate on the floor with no way to get up. He had to be assisted each time he went to the bathroom but thought he’d sneak one over on them this time. I lifted him into bed – right, the guy with heart failure assisting the old guy with who-knows-what. I went to the nurse’s station and in came a procession of nurses and a doctor. No real damage, but my roommate wanted an ace bandage on his knee for his efforts. They obliged and tuck him in.
Lights out. Lights out until they leave, that is. 4:15 a.m. and his lights go back on. The room is illuminated! He’s wide awake. He turns on his TV which is also in my line of sight. Station after station. Finally music. Where does the eighty year old stop? RAP! Five minutes of RAP music during the wee hours is about all I can stand. Why would he? Maybe he’s deaf? Maybe he fell asleep? Finally he starts playing with the controller again – still can’t find the off button.
He’s channel surfing and comes upon what appears to be a talk show. I never watched TV at this hour and never even wondered what programs they had on. They must loosen regulations because what I saw was a nice looking man doing the interviewing of this really nice looking young lady dressed like she had just put in her stint at a gentleman’s club. On the other side of the lady was a young, very normal looking young man. By now I was ready to put my pillow over my head to escape the noise and light. But the words wouldn’t allow sleep at this time. Nice looking host to foxy lady: “As good as it is, wouldn’t it be great with a 25% enhancement?” Foxy lady to host “The bigger the better.” Host to normal looking young man: “25% enlargement of penis, no risk, from a pill, is this for real?” Nice looking entrepreneur: “True, true, true. My company…..” No way, the craziest infomercial I’d ever seen. Thank goodness neither my roommate nor I needed such a pill at our ages and condition (come think of it, who does?) Surely he’ll turn off the damn TV and lights now! I turned my face into my pillow and forced myself to go to sleep. I know he watched the rest of the show. I went in and out of sleep until 7 a.m. when the nurse came in to do my vitals. I hate to think what my blood pressure was after that experience and a maximum of six hours of near sleep!
Tuesday they wheeled me from test to test. Echocardiogram at 9:00. Turn in 24 hour urine test at 10:00. Ultrasound next which kept me from seeing my Cardiologist, Dr. Falk, at the appointed time. I saw my Hematologist, Dr. Seldin as scheduled. Several times that day I had visits from Dr. Nordlinger. She was the doctor assigned to me to pull together all the tests and oversee the evaluation process. A truly wonderful young lady, about 30 years old. How she has the knowledge and the people skills at that early age amazes me. She grew up in Cheltenham, Pennsylvania – one town over from where Judy and I grew up (Jenkintown). Her support and caring made our visit so much easier.
Dr. Falk finally was able to see me around 6 p.m. I know he gave up being with his family to take care of my rescheduling. I believe he was working on my case until well after 8 p.m. Here comes my only regret of my visit. He interviewed and examined me on my hospital bed. I looked about as different from the Chip Miller you know as was humanly possible: tee shirt, pajama bottoms, hair a mess, and bulging with excess fluids. HOW MUCH EXCESS FLUID? I weighed 178.5 pounds when we left Carlisle on Sunday. I now weigh 163 (less than a week). It might have been Dr. Falk that jokingly said I looked like the Pillsbury Dough Boy. On top of this I told him I had Honey Baked ham on January 1 (an excess of ham) and had had a slice of pizza for lunch on Monday. Honestly, I knew nothing of dieting and how necessary it was to restrict my sodium intake. He looked at me like I was a 61 year old fool – and he was right!
We discussed damage the Amyloids had done to my heart and other organs. It was not pleasant. His last words were not the words I wanted to hear. I’m afraid if I leave things the way they are now, I’ll not be recommended for the stem cell transfusion. It gets pretty deep here, but it’s important I focus on my original mission (stem cell transfusion) tomorrow and Monday. Hopefully I’ll share some of my challenges and how I meet them at a later date. As John Belushi said in Animal House: “It’s not over until it’s over.”
After my session with Dr. Falk I was released from the hospital.
Wednesday I finished my appointments. Dr. Dember, the Nephrologist. Again, talented and kind. The PFT’s that I missed on Monday. More bloodwork. Dr. Nordlinger’s review and hugs. Finally, one session not on my list: a visit with a dietician specializing on Amyloid patients and heart patients. This was so eye-opening. Now I know how much sodium intake I can have each day the rest of my life: 2100 mgs. That ¼ pounder with cheese I used to eat at McDonald’s is 1310 mgs! The favored sandwich from a fast food place was Wendy’s chicken sandwich – no, no – 750 mgs. At least I know and now Judy and I have a new project – we look at all the labels and will almost never eat out again! Counting sodium content versus counting calories is quite a bit different. Some things I’d not be able to eat while watching my weight I can eat on my low sodium diet. Milk is okay. Same for ice cream. I must have protein at lunch and dinner – red meat, fowl, eggs, or fish. Quite an effort for Judy, but these items at the restaurants have additional sodium from preservatives and the spices used in their preparation. Enough of this – let it be said that Kim Minogue of the Boston Medical Center Food and Nutrition Department put me on the right track to limit my sodium intake and in so doing reduce the fluid build up in my body. This knowledge alone will extend my life substantially.
*****
I’ve charted my weight starting December 23rd. I know what the ham dinner did to me on January 1st. I paid the price of ignorance and survived it. Now my focus is on getting the rest of the fluids out and returning my weight to where it should be.
The diuretics have done their job – maybe another 5-7 pounds to go. Past that, I’ll worry about blowing away in a stiff wind. And why did I throw away three pairs of pants a few weeks ago because they were too tight? Now I’m in two belt notches and probably will have to buy some tighter pants. Not too many people complain of this problem!
One doctor, not sure if it was here or in Boston, said I looked like the Pillsbury Dough Boy. He was joking, but I’m happy I don’t see that image in the mirror any more.
The attention and outpouring of concern and love I received in Boston is something I’ll always cherish. I’d be less than honest in saying I don’t fixate on returning for the stem cell treatment. I’m still focused on making it happen if it is in my best interest. The doctors I met with will convene on Friday and make a recommendation for my treatment as a group. Let’s put our heads and prayers together that they make the decision to accept me on my merits. If it is too late for this treatment, there are others. None offer the same chances for additional years that the stem cell transplant offers. It is now in the doctors’ and God’s hands. Who better to determine my fate?
*****
As I promised, I took the copies of all messages received on this site with me to Boston. I read each message twice. I’m overwhelmed! I’m humbled! How special to receive your messages and how special to have a medium like CaringBridge.org.
Through Corvettes @ Carlisle, our company has already proposed sending funds received from our benefit auction to the Amyloid Treatment and Research Program and I’m likely to suggest we take a portion to donate to CaringBridge.org. I think this is one of the finest concepts used on the internet and will grow to help and support thousands of people with the same communications needs in the future. I’ve yet to contact them with my appreciation, but certainly will soon.
This was the ultimate windy message. Gone a week and full of stories! Thanks for reading my ramblings. More thanks for the prayers and messages and out pouring of sentiments and love. This message will most likely stay up until next Thursday or Friday. Some family members are coming in tomorrow (go, Eagles). Monday, Tuesday and Wednesday will be full of medical and legal appointments. I’ll also be focused on anything I can do to communicate positive vibrations towards Friday’s meeting in Boston.
Life is good,
Chip
Saturday, January 10, 2004 9:37 AM CST
We're baaack!
Sorry for the delay in logging on and bringing you all up-to-date. We arrived home Thursday afternoon and Judy and I have been up to our eyeballs catching up.
We're taking off in a few minutes - destination health food grocery store. I'll bring you all up to speed upon my return home. I really feel bad to have the same message posted for one whole week and won't allow that to happen again. If this is your first visit to this site, check out the past messages. If you are here for my update, please log back in tomorrow (Sunday). Before my head hits the pillow tonight I'll report on the activities of the past week (Boston) and my current feelings.
Thanks for your prayers, messages and love.
Chip
Saturday, January 3, 2004 5:34 PM CST
This journal message is slightly revised from the one I posted mid-day. The main revision is to let you know we won't be taking our computer to Boston so our next update will be late Thursday or Friday morning.
THE PHONE CALL CAME YESTERDAY – THE WELCOME MAT IS OUT IN BOSTON!
Today is Saturday and we’ll be packing our bags tonight to fly to Boston tomorrow. This is the first step – evaluation and I’m sure many more tests. We’ll start at 8:30 Monday morning and will conclude Wednesday afternoon. Judy and I will fly back to Carlisle Thursday. I’m not sure how much will be discussed or determined when we leave Boston – I assume reports will be forwarded to my doctor in Harrisburg and one of my doctors in Philadelphia.
I’m hoping the suggested treatment will be the one using my own stem cells. If interested in the procedure, the best description I could find is at www.amyloidosis.org/treatment/primary.asp
For those of you anxious to read the completion of my last message (New Years Eve), I’m sorry to disappoint. Time won’t permit it for now. Oh, I hear the applause – stop it. A lot of words describe my phone conversations and writings, but brevity is not one.
I think we passed 2,000 visits to my page this morning. How incredible! Judy posted the page less than a week ago.
As we prepare for our trip I’d like you all to know how special I feel. Your prayers, your calls, your emails and your visits to this site have been overwhelming. I’ve received all the calls, answered all the emails and read all the entries on this site. I have to say it takes a lot out of me to talk and write so much. As I receive treatment, I know I won’t be able to talk on the phone or answer emails – and that will hurt because I’m in the habit of doing so. Even now, Judy and I’ll be gone for five days without our computer. A huge number of calls and emails will only frustrate me when I get home. I acknowledge they are all well meaning and I know you are all my friends and you care. This is where we can let this web site help. Feel free to make as many entries as you wish – Judy and I will do the same. Just know I won’t be replying to the messages you leave. I’d go crazy trying to do so. I will read them. I’m going to print out all the messages again tomorrow morning and take them with me to Boston. I’ll read them on the plane and I’ll read them in our hotel room. I will focus on them and treat them as the foundation of my recovery. When we get back to Carlisle I’ll print another batch. I’ll look forward to seeing them while I’m in Boston. THE ENTRIES YOU MAKE WILL BE MY SUPPORT! I’ll keep them with me forever – no matter how big a binder I have to have to keep them in.
During the treatment phase (if I’m fortunate enough to be treated in Boston), we’ll take our computer and Judy will do most of the updating. When strong enough, it’ll be my enjoyment communicating with you.
The whole deal is to get to that light at the end of the tunnel. I can see it. It is bright, but distant. Each day that light will get a little brighter, and bigger. I need to focus on it. Caringbridge.org has allowed us a way to do it. Frankly, right now I’d be lost without it!
Enjoy your winter wherever you are. You’ll see the light without looking through a tunnel. That light is there to enjoy. I’ll watch for a while; then I’ll join in. Again. It’ll be great.
Thanks for your prayers, friendship and love,
Chip
Click on the blue book directly below to read past entries. If you'd like to review comments of others and/or leave your own message, click on the yellow guestbook. Our son, Lance, will be adding photos in the near future.
Saturday, January 3, 2004 11:16 AM CST
THE PHONE CALL CAME YESTERDAY – THE WELCOME MAT IS OUT IN BOSTON!
Today is Saturday and we’ll be packing our bags tonight to fly to Boston tomorrow. This is the first step – evaluation and I’m sure many more tests. We’ll start at 8:30 Monday morning and will conclude Wednesday afternoon. Judy and I will fly back to Carlisle Thursday. I’m not sure how much will be discussed or determined when we leave Boston – I assume reports will be forwarded to my doctor in Harrisburg and one of my doctors in Philadelphia.
I’m hoping the suggested treatment will be the one using my own stem cells. If interested in the procedure, the best description I could find is at www.amyloidosis.org/treatment/primary.asp.
For those of you anxious to read the completion of my last message (New Years Eve), I’m sorry to disappoint. Time won’t permit it for now. Oh, I hear the applause – stop it. A lot of words describe my phone conversations and writings, but brevity is not one.
I think we passed 2,000 visits to my page this morning. How incredible! Judy posted the page less than a week ago.
As we prepare for our trip I’d like you all to know how special I feel. Your prayers, your calls, your emails and your visits to this site have been overwhelming. I’ve received all the calls, answered all the emails and read all the entries on this site. I have to say it takes a lot out of me to talk and write so much. As I receive treatment, I know I won’t be able to talk on the phone or answer emails – and that will hurt because I’m in the habit of doing so. Even now, Judy and I’ll be gone for five days without our computer. A huge number of calls and emails will only frustrate me when I get home. I acknowledge they are all well meaning and I know you are all my friends and you care. This is where we can let this web site help. Feel free to make as many entries as you wish – Judy and I will do the same. Just know I won’t be replying to the messages you leave. I’d go crazy trying to do so. I will read them. I’m going to print out all the messages again tomorrow morning and take them with me to Boston. I’ll read them on the plane and I’ll read them in our hotel room. I will focus on them and treat them as the foundation of my recovery. When we get back to Carlisle I’ll print another batch. I’ll look forward to seeing them while I’m in Boston. THE ENTRIES YOU MAKE WILL BE MY SUPPORT! I’ll keep them with me forever – no matter how big a binder I have to have to keep them in.
During the treatment phase (if I’m fortunate enough to be treated in Boston), we’ll take our computer and Judy will do most of the updating. When strong enough, it’ll be my enjoyment communicating with you.
The whole deal is to get to that light at the end of the tunnel. I can see it. It is bright, but distant. Each day that light will get a little brighter, and bigger. I need to focus on it. Caringbridge.org has allowed us a way to do it. Frankly, right now I’d be lost without it!
Enjoy your winter wherever you are. You’ll see the light without looking through a tunnel. That light is there to enjoy. I’ll watch for a while; then I’ll join in. Again. It’ll be great.
Thanks for your prayers, friendship and love,
Chip
Wednesday, December 31, 2003 10:20 PM CST
Chip, again.
The only thing I don't like about this page is when Judy or I make an entry, it puts the last entry in the archive. If you'd like to visit the past entries (only three at present), just click on the book immediately after this message.
One more gripe before I get to the message for today, there is no spell check so you get to see why I didn't get an "A" in spelling. Too many words to write, not enough time to go to the dictionary.
I clicked on New Years Eve at about 11:15. What a shock - 446 visits since Judy put up the site late Monday. This is only Wednesday! I'm shocked and humbled. I appreciate all your wonderful comments and support. I've recieved dozens of calls, but while they give me pleasure they also take some of my energy - energy which is now being built up for my visit for evaluation at Boston (see my last message). Personal emails are coming in fast and furious, but again I acknowledge each and every one with a reply. Takes some time and I'll continue doing it until I feel it's draining me too much. THE ULTIMATE CONTACT IS TO SIGN IN AND COMMENT IN OUR GUESTBOOK (BELOW). I read each message and will print out the entire book when I leave for Boston. Your words will be with me throughout the good times and the tough times. They will also return with me to Carlisle after treatment and give me support to continue wherever this road leads me. Important also is I will not be tempted to personally respond to these messages - it would put too much strain on me. You can rest assured the message will reach me and play a part in my continuing positive mental attitude. Judy is very much in need of your thoughts and prayers also. We're in this 50/50 and I think it's tougher on her right now.
In my last "brief" message I indicated I'd address a couple of topics in the future. That future is now.
First a little history as to why it took so long to diagnose. Actually, I'm not even sure where and when it started. The doctors say there is also no known reason some people are singled out with the Amyloid disease, but only 1200 - 3200 cases are reported worldwide per year. Others certainly perish undiagnosed.
In my case, I started noticing depressions in my legs where my socks had the expansion material at their tops. Each night, there was a small round ring around each of my legs. This probably started in the second quarter of 2003. As the calendar moved closer to Corvettes at Carlisle (end of August) I found I had to go to bed earlier - just really worn out each day. Weekends (non-show weekends) allowed for some extra sleep time. Not really my normal habit. The shortness of breath probably came a little after Corvettes at Carlisle. My family doctor told me it was time to exercise a little more. I knew the way I walk all over the place and am always in high gear that my shortness of breath came on too quickly to be just a lack of exercise.
I raced at Summit Point the weekend before Fall Carlisle (end of September). I'm glad I did - it was the first time I really competed with my '59 SVRA Corvette and enjoyed it. This weekend is usually in conflict with Fall Carlisle, so I'm able to compete only once every seven years at their event. I love the track and it is only two hours from home. Tom Lalinsky has put untold hours of preparation into this car and I'm glad I experienced what it can do. It's a winner! Lance Smith transported the car to the track and did the work at the track (along with Tom). He turned out to be my angel for the weekend. I literally was out of steam each time I pulled the car in. There is no way I could have been car transporter and car mechanic that weekend. Again, I thought something was wrong with me but it didn't knock me over the head and say go to the hospital! I believe I had more fluid buildup in my legs and feet at that time, but again wasn't too worried. Shortness of breath might have been present, but not to a great extent.
The next weekend was Fall Carlisle and I wasn't myself. Some shortness of breath and some more fluid buildup. I did the best I could, but left my golf cart parked for the weekend. All contact with vendors was through walking the show. Sleep seemed to be more necessary than ever before.
Hershey was the breaker! I started walking Hershey Flea Market in 1970 or 1971 will Bill Miller. In 1973 we conceived the Carlisle swap meet at the Hershey show. We've never missed a Hershey since. 2003 was no exception. Only problem was, I was out of steam.
BREAK IN THE ACTION - HAD TO GO CELEBRATE THE NEW YEAR. SNUCK IN A TEN MINUTE HUGGING SESSION WITH JUDY. WHAT DO YOU MEAN: WHAT ABOUT KISSES? NONE OF YOUR BUSINESS! WELL, OKAY, WE STILL DO A LOT OF THAT. BEST OF ALL IS THE HUGS - EVERY NIGHT FOR 37 YEARS WHEN WE GO TO BED. LIFE IS GOOD!
HAPPY NEW YEAR EVERYONE! DID YOU SEE THE CHEVROLET AD WHICH HAD THE C6 IN IT ABOUT TEN MINUTES BEFORE MIDNIGHT? DAVE HILL AND EVERYONE ELSE INVOLVED FROM THE CORVETTE TEAM - I WISH I COULD BE WITH YOU OVER THE NEXT WEEK OR TWO IN DETROIT. I KNOW YOU UNDERSTAND. CAN'T WAIT TO SEE THE REAL CAR. I'LL PUT IN MY RESERVATIONS TO BE THERE WITH JUDY FOR THE INTRODUCTION OF THE C7.
Okay, Judy's right. I wrote a few more paragraphs and she is dragging me to bed. Not as much for the hug but to keep me from writing a book. Let's stop here for tonight and I'll finish the chain of events leading up to diagnosis in the future. All symptoms given above are indicative of heart failure - that's where this is leading.
For now, it's off to bed and get my sleep. Judy and I will be with our children and grandchildren later today at Evie's (our oldest daughter) house.
BEST WISHES TO ALL OF YOU FOR A HAPPY AND HEALTHY 2004!
Chip and Judy
Wednesday, December 31, 2003 10:20 PM CST
Chip, again.
The only thing I don't like about this page is when Judy or I make an entry, it puts the last entry in the archive. If you'd like to visit the past entries (only three at present), just click on the book immediately after this message.
One more gripe before I get to the message for today, there is no spell check so you get to see why I didn't get an "A" in spelling. Too many words to write, not enough time to go to the dictionary.
I clicked on New Years Eve at about 11:15. What a shock - 446 visits since Judy put up the site late Monday. This is only Wednesday! I'm shocked and humbled. I appreciate all your wonderful comments and support. I've recieved dozens of calls, but while they give me pleasure they also take some of my energy - energy which is now being built up for my visit for evaluation at Boston (see my last message). Personal emails are coming in fast and furious, but again I acknowledge each and every one with a reply. Takes some time and I'll continue doing it until I feel it's draining me too much. THE ULTIMATE CONTACT IS TO SIGN IN AND COMMENT IN OUR GUESTBOOK (BELOW). I read each message and will print out the entire book when I leave for Boston. Your words will be with me throughout the good times and the tough times. They will also return with me to Carlisle after treatment and give me support to continue wherever this road leads me. Important also is I will not be tempted to personally respond to these messages - it would put too much strain on me. You can rest assured the message will reach me and play a part in my continuing positive mental attitude. Judy is very much in need of your thoughts and prayers also. We're in this 50/50 and I think it's tougher on her right now.
In my last "brief" message I indicated I'd address a couple of topics in the future. That future is now.
First a little history as to why it took so long to diagnose. Actually, I'm not even sure where and when it started. The doctors say there is also no known reason some people are singled out with the Amyloid disease, but only 1200 - 3200 cases are reported worldwide per year. Others certainly perish undiagnosed.
In my case, I started noticing depressions in my legs where my socks had the expansion material at their tops. Each night, there was a small round ring around each of my legs. This probably started in the second quarter of 2003. As the calendar moved closer to Corvettes at Carlisle (end of August) I found I had to go to bed earlier - just really worn out each day. Weekends (non-show weekends) allowed for some extra sleep time. Not really my normal habit. The shortness of breath probably came a little after Corvettes at Carlisle. My family doctor told me it was time to exercise a little more. I knew the way I walk all over the place and am always in high gear that my shortness of breath came on too quickly to be just a lack of exercise.
I raced at Summit Point the weekend before Fall Carlisle (end of September). I'm glad I did - it was the first time I really competed with my '59 SVRA Corvette and enjoyed it. This weekend is usually in conflict with Fall Carlisle, so I'm able to compete only once every seven years at their event. I love the track and it is only two hours from home. Tom Lalinsky has put untold hours of preparation into this car and I'm glad I experienced what it can do. It's a winner! Lance Smith transported the car to the track and did the work at the track (along with Tom). He turned out to be my angel for the weekend. I literally was out of steam each time I pulled the car in. There is no way I could have been car transporter and car mechanic that weekend. Again, I thought something was wrong with me but it didn't knock me over the head and say go to the hospital! I believe I had more fluid buildup in my legs and feet at that time, but again wasn't too worried. Shortness of breath might have been present, but not to a great extent.
The next weekend was Fall Carlisle and I wasn't myself. Some shortness of breath and some more fluid buildup. I did the best I could, but left my golf cart parked for the weekend. All contact with vendors was through walking the show. Sleep seemed to be more necessary than ever before.
Hershey was the breaker! I started walking Hershey Flea Market in 1970 or 1971 will Bill Miller. In 1973 we conceived the Carlisle swap meet at the Hershey show. We've never missed a Hershey since. 2003 was no exception. Only problem was, I was out of steam.
BREAK IN THE ACTION - HAD TO GO CELEBRATE THE NEW YEAR. SNUCK IN A TEN MINUTE HUGGING SESSION WITH JUDY. WHAT DO YOU MEAN: WHAT ABOUT KISSES? NONE OF YOUR BUSINESS! WELL, OKAY, WE STILL DO A LOT OF THAT. BEST OF ALL IS THE HUGS - EVERY NIGHT FOR 37 YEARS WHEN WE GO TO BED. LIFE IS GOOD!
HAPPY NEW YEAR EVERYONE! DID YOU SEE THE CHEVROLET AD WHICH HAD THE C6 IN IT ABOUT TEN MINUTES BEFORE MIDNIGHT? DAVE HILL AND EVERYONE ELSE INVOLVED FROM THE CORVETTE TEAM - I WISH I COULD BE WITH YOU OVER THE NEXT WEEK OR TWO IN DETROIT. I KNOW YOU UNDERSTAND. CAN'T WAIT TO SEE THE REAL CAR. I'LL PUT IN MY RESERVATIONS TO BE THERE WITH JUDY FOR THE INTRODUCTION OF THE C7.
Okay, Judy's right. I wrote a few more paragraphs and she is dragging me to bed. Not as much for the hug but to keep me from writing a book. Let's stop here for tonight and I'll finish the chain of events leading up to diagnosis in the future. All symptoms given above are indicative of heart failure - that's where this is leading.
For now, it's off to bed and get my sleep. Judy and I will be with our children and grandchildren later today at Evie's (our oldest daughter) house.
BEST WISHES TO ALL OF YOU FOR A HAPPY AND HEALTHY 2004!
Chip and Judy
Tuesday, December 30, 2003 9:10 AM CST
It's Chip. I have Amyloidosis. Not proud of this. Not overjoyed! But not scared. Not without a clear vision of what my "new life" will be after the treatment I am hopeful to receive.
I'll give the background of what led up to my dianosis in another message. For now, what you care most about is my mental and physical state. Both are good.
Last Monday, December 22nd, Amyloid was confirmed. I think a couple of my doctors and I were fairly certain of it a week or two prior. Confirmation was made from blood tests and a scrape made during my colonoscopy a couple of weeks ago - again, this will be a part of my next "history" entry, but boy do I owe that doctor!
Instead of letting the Amyloid get me down, Judy and I are moving ahead towards a potential cure (or at least a way to extend my life). A positive mental attitude replaced the shock of the discovery day. So did word of a place that can help me: The Boston University Medical Center, Amyloid Treatment and Research Program. They are not taking calls during the holidays, so we are moving ahead locally getting the tests done that they will need to give me an appointment for evaluation. I've read the evaluation will take three days - what's a few more tests when I've had seemingly a hundred already. If they think I'm a candidate for their treatment (we all know I am), they'll set the stage and Judy and I will move to Boston for treatment which will take five to eight weeks. It'll most likely be harder on Judy than on me - she'll be Nurse Judy, Wife Judy, Spic an' Span Cleaning Lady Judy, Phone Answering Judy, Pill Administer Judy, Transportation Specialist Judy, and on and on. Me, I'll probably be out of it most of the time.
In a nutshell in layman's words: The doctors will remove bone marrow from me. It contains stem cells which are good and I suppose plenty of those nasty little Amyloid cells. Somehow, their success depends on separating the good cells from the bad and preserving the good cells to be placed back in my system after my immune system has been shut down. As I understand it, they kill the cells remaining in my body with chemo. There will be a period where my immune system is devoid of cells to fight off infections and germs. My good stem cells get placed back into me and start anew. Simply put, the good replace the killed cells and generate new good cells. As I become more educated, I'm certain it will be necessary to eat or change a few of these words - but I think the concept is clear.
That's my future and about all I focus on now. Get the tests to Boston. Get an invitation for an evaluation. Convince them I'm a worthy (healthy enough) candidate for their program.
Again, I have a team of doctors pulling for me - more on that in a future edition. Above that, I have total dedication from my wife of 37 years - she can't bail on me now! Add friends and prayers - how can Boston say no?
Upcoming topics over the next few days will be:
1. A history - when did it start and why did it take so long to diagnose?
2. Some small miracles - mostly centering around my business parnter and friend, Bill.
3. Some special doctors to my rescue.
I'm finding Judy's discovery of CaringBridge an unbelievable help to me. I've been speaking too much on the phone which takes me away from my main missions: tests, estate planning and getting to Boston. CaringBridge allows me to spill my heart out for everyone. You all get the same info. When on the phone it's hard for me to remember what I've told each caller in past calls. There will come a time we can all catch up on the phone or by email, but for now this is a logical way for me to stay in touch with you. I don't know if we can have a sign in sheet on this page, but I'd love to know who visits.
Just like on the phone, I've carried on too long in this message. I commend you for reaching the end. Much more to come in future days and weeks. Stay tuned, and thanks for your concern and prayers.
Chip
Sunday, December 28, 2003 10:03 AM CST
As of right now all we know is that Chip has been confirmed as having amyloid - working with doctors from Jefferson towards having him admitted to Boston University Amyloid Clinic - Will keep all posted once we know treatment has begun. Keep us in your prayers.
Sunday, December 28, 2003 9:57 AM CST
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