What a long strange trip it has been---and this is only the starting line. It just seems this insidious problem with my blood moves at a very fast pace. I'm a 57 year old CPA that knows tax season 2005 was a struggle and after seeing how rapidly my numbers deteriorated, I now know why.
The three days spent at Boston University Medical Center (BUMC) now called Boston Medical Center, were the best and the worst. The best because of the kind Angels that tested and cared for me. The worst because they confirmed the Amyloidosis. The BUMC works like a well oiled machine never wasting a moment of time and always working towards one goal---find and fix!
I spent more time face to face with Dr. Wright than I have with any other specialists in my life-except when they were discussing their taxes. I could tell he is a kind and thoughtful man, one who is passionate about his work and dedicated to eradicate the challenge I have. I know that he has other patients, but he made me feel as if I was at the top of his totem pole. In fact, all the people at BUMC gave the same feeling: a truly great hospital.
Boston is a wonderful place for me. Given my Irish lineage and the fact that it is the cradle of our democracy, I feel very patriotic when I visit.
You know, I ran the 1996 Boston Marathon. It was the 100th running and the 40,000 plus others running were in the same festive mood as me. I needed the help of my Auntie Mame, Kate, Alma and Helen to finish. Also with me was Cousin George and Auntie Mary (dad's one of a kind sister). They all lived a good long life-with some over 100 when passing and Aunt Mary, well what can I say; she is 93. I would ride in a car she was driving if she promised to wear glasses and I would never get into a game of Scrabble with her!
Now let's take a moment to discuss the state of health care. Let me rant about it. You are in charge, you are responsible for your health care-don't ever forget that. Your doctors are the facilitators of treatment. They are the experts. But let's face it, even the experts cannot tell you how your body feels. Take charge, read, ask questions and your facilitators will be much more responsive. Along the way your will find Angels flying in and out to assist you. Be nice, kind and thoughtful to your facilitators and you will find the journey an easy one. For example, Rita from Blue Cross let me know that they will pay $100/day towards my hotel bill, $24/day for food and $250 towards air fare. I made sure I thanked her and told her I thought she was one of the Angels that came to my rescue. Remember a PPO insurance plan is a little more expensive over a HMO; however, it is so much better in terms of selection of health care providers. Well, I had the dreaded HMO and my good friend John Curtan and his partner Shannon Zajac worked their magic and immediately transferred me to a high deductible PPO with little increase in monthly cost. I had little difficulty with my treatment plan and they get free tax returns for the rest of their lives!
One more thing: demand (in a nice way) to be tested thoroughly. Don't assume your doctor has seen your problem. Tests are out there that can detect almost everything.
The following is my daily journal as I wrote it during the treatment:
May 28, 2005
The Party-Stephanie organized and threw a Saturday night bash at her house. I would say this sort of thing is good for the soul. All my friends were in attendance; it was a spirit lifting event. Not necessarily in order of appearance: The Lep Mike, Psycho I Allen, Ed, Jim and Diane, Lance and Carrie, Tina and Bill, Dad, Mark and Amy, Oscar and Carolyn, Bernie and Jana, John and his mom Bernice, Nita, Trevor, Craig, Bruce and Joann, Lindsay and Ryan, Jim and Chris, John and Alice.
Jim presented me with an iPod from all the Derelict Golfers (our group) and I must say it brought tears to my eyes. Tina (my sister), gave me an old Irish saying which was inspiring and Stephanie gave me a four Leaf Clover key ring and some items to keep close during treatment. Lance and Carrie did all the cooking and Stephanie received many comments on how nice her house and yard looked. Me, I was completely overwhelmed. It was a great night.
June 6, 2005
The flight to Boston was exhausting! Then Pat (my brother) and I waited for at least an hour for the car to be processed. Thank goodness Pat was with me as I ran completely out of steam. The apartment I rented is very well appointed, comfortable and a place I can easily call home for the next month or so. We were told the Union Restaurant had good food so going there for dinner was a no brainier-it was great! I had trout and Pat had chicken.
June 8, 2005
I had blood tests from a young lady I declared was the Vamp. Then I met with Kate Fisher the stem cell nurse and another Angel. I was told to stop taking Lipator and vitamins. I met with Dr. Karen Quillen, my initial hematologist. She explained the medications I would be taking and the high dose chemotherapy. She explained that since I was on dialysis, it was going to be extra difficult.
After meeting with the stem cell nurse, getting blood drawn and meeting with the hematologist, I was given a consent form to read and sent home. It's a good thing because I was out of it most of the day and struggled to keep up with what was going on. I had dialysis in the morning and it took too much out of me. I will make darn sure this will not happen again. Dr. Quillen agreed that I need to be more assertive at the dialysis center. It's now the next night and I am just starting to recover from the dialysis.
My meeting with Dr. Quillen and the consent form brought home the seriousness of this problem. I must admit that I am a whole lot more scared right now. I wish my Mom were here to help me. This is going to be a very rough road but I fully intend to beat this thing and keep my spirits high. Contrary to the statistics, I intend to have my kidneys function again!
June 10, 2005
Yesterday, Pat and I took a three mile trip to the USS Constitution. About an hour and a half later, after touring the entire city of Boston we proved the point made by a Bostonian when asked for directions-"you can't get there from here!" I feel so American when I see that great vessel. It proves the saying "American Ingenuity". It was a feared ship and WOW it never lost a battle: it just gave me chills.
I guess it may have been a mistake walking to the dialysis center because my blood pressure fell to a dangerously low level 83/43. I felt faint for about a half hour. Last night the fear set in as I face the first day of treatment today. After reading all the information I was given I began to think of all the things that could go wrong. Some prayers and positive thinking changed at that-more to come.
Nurse Cynthia is my nurse. I was visited by Dr. Melanie Nordlinger who is on a fellowship here at the hospital; she has great red hair. Joann came in, who is another nurse, in fact I have (as do others), a regular cadre of nurses, all of which are caring, lovely people.
June 11 and 12, 2005
Saturday June 11, Pat and I took a drive to Gloucester to see the site of the movie "The Perfect Storm". It is a typical New England fishing village with coastal inlets, channels, salt box houses and lot of woods.
We came back and I went to dialysis and received a "G" shot which helps promote growth of blood. Well, I tell you dialysis was a ZOO! There were people yelling, workers yelling at each other-a really bad scene. As soon as I came home, it started. I felt absolute aching in the lower back and knees. Then the chills set in and then the fever. What a night. It ranked in the top five worse nights I ever spent suffering. The temperature went 99.9, 100.1, 100.2, and 100.3 and then about 3am, it broke and started coming down.
Sunday was just a shot day followed by a lot of rest.
June 13, 2005
First day of stem cell gathering and I feel better than I have in quite some time. It was easy laying there while this machine separated my infant stem cells from my blood. The nurse said they looked great, but until the numbers come back at about 3pm, we don't know for sure. My platelets are excellent and they don't need to reinject any as my count is high enough.
Oh yeah, the car broke down this morning and I walked to the hospital. It was a good test of my resolve. Poor Tina (my sister now here), first the car will not start for her and then she lost her cell phone and now it's 3:30pm and she still has not returned to the hospital. She left to get a new phone and car about 11:00am. I think I would consider a car rental company other than Budget.
June 14, 2005
Weight is 214.4 as I put on some weight due to the Nupogen shots. This day started very well, knock on wood. I hope we harvest enough stem cells to skip tomorrow. I am now taking Ativan to calm my nerves (good stuff).
Today was another stem cell gathering day. I spoke for almost an hour with the shrink. He is a nice fellow who is going to work at the VA hospital.
We will not know the numbers until later, but it appears we had another very good collection day. My blood pressure is coming up and to tell you the truth, I feel better. The Nupogen drug makes me gain weight, but that is normal. I'll be off to dialysis shortly-that means from 8:00am to 2:00pm in stem cell collection and 3:00pm to 6:00pm at dialysis; long day.
Let's face it; this problem can cause you to go crazy. This is a very long day (see last paragraph). I just want to be well again!
June 15, 2005
Yesterday, the shrink gave me the once over or, I should say, I gave him the once over, He was a nice young man that obviously wanted to know my state of mind-little does he know that I am the patient with all those wonderful people back home praying for me. I will lick this thing that I promise (with God's help).
The day was long, very long. After stem cell collection I went into dialysis. It was the same old confusing place. It was workers hollering at each other and lots of mass confusion.
They needed about a million more stem cells so they kept me on the collector for three hours. Rather uneventful time. Afterwards I talked with Dr. Quillen about a new drug that will help with the mouth sores and esophagus sores while on chemo. I will be the second person to try this and felt rather privileged to be so; Palifermin is the drug name. There should be no side effects other than a thickening of the tongue and mouth walls. Slept well during the night---had a great steak dinner. No shots or weird stuff today, a little restful.
June 16, 2005
This was a rather uneventful day; we had nothing scheduled at the hospital and only 3:00pm dialysis. We just laid around the house and rested the whole day. Dialysis was almost enjoyable for a change-it was a little quieter. Went to bed early and ended a restful day with more rest. I took a picture on my sister Tina on her new phone. I made it her wallpaper and then wouldn't take it off!
June 17, 2006
Palifermin (Kepivance)-it looks like I receive six doses of this drug; three before chemo and three afterwards. It helps with the sores.
Well, I was just told how many ways the cure (chemo with melphalan) is going to do me in! Not a pleasant conversation. The remainder of the day was spent purchasing a printer, setting it up and screwing up the internet connection. I am so frustrated with the computer right now. I can't get connected to anything.
We also walked the neighborhood. This was quite nice and we found a basement meat market/deli which has only grass fed beef; great place and it also has fresh veggies.
June 18 and 19, 2005
Saturday, Tina and I went on the hunt for a Cingular store. We went over to Cambridge (Harvard) to see that end of town, walked around, went into an Any Mountain store, bought a shirt (nice) and then went for a walk. I think we walked about 2/3 of a mile, which was real nice. We lunched at a burger stand that has been in operation since 1960 and it was a treat. We then came home to the dreaded dialysis. I waited forever to get seated but kept a smile on my face in spite of the fact that I was mad as heck.
Natalie (my daughter) came; it was nice to see her. We had dinner together with Tina. Tina made a wonderful pork tenderloin.
Sunday, Happy Birthday Natalie, Happy Fathers Day Me Tina and Natalie spent the day together getting orientated to the community. They bought food and other necessities. We now have a complete kitchen. Birthday/Fathers Day dinner was great. Natalie cooked a delicious casserole. She gave me some new comfy shorts, a shirt, and a hat. I needed them all. It's off the chemo tomorrow.
June 20, 2005
Well my mouth is dry and tongue larger than normal. The Palifermin is working to help protect me from getting sores. Last night was a diarrhea night. This morning was a vomiting morning. I think it is more nerves related. I must admit that I am more than a little nervous about this thing. Kate Fisher came in and answered all my questions-she is so nice.
We are getting ready for the chemo. They said noon but it is now 12:15pm and no chemo yet. You ask why the impatience? Well they tell you to fill your mouth with ice for 15 minutes before chemo to help prevent sores and my mouth feels like the Bearing Sea in December! Oh heck, I just had lunch as they decided to put off the chemo for awhile because the pharmacist has two other patients. Natalie has been a great daughter throughout this whole thing.
I just finished my first 200mg of chemotherapy and will now get re-hydrated for a couple of hours. Except for the cold brain from sucking on the ice, I don't feel all that bad. I guess it will have its effect in about two weeks.
June 21, 2005
First day of summer! It's my brother Pat's birthday and I am sitting here getting re-hydrated for the second day of chemo. I called Pat to wish him a Happy Birthday, thinking he was only two hours before us here at 8:30am, but it is three hours or 5:30am back home. Being a nice brother, he was OK with it.
This morning, I had a long hydration period and then 200mg more of the tough stuff. With the medications they gave me, my head went south and I felt a little high or spacey. I ate a lot of ice again and that, along with the Palifermin will prevent mouth and esophagus sores. Actually, I feel not so bad-the nurses are great and helpful. I had a visit from Dr. Sanchorawala, my new hematologist. I really like her. She told me tomorrow would be a short day.
June 22 and 23, 2005
Yesterday, the 22nd was a rather uneventful day. We visited the hospital, talked with Dr. Sanchorawala and left. We went to Central Square to find a Cingular store. I wanted to get a new phone but couldn't due to my phone being from California. We walked around and ate then visited Harvard. We came home and had a wonderful dinner which I unloaded about 11:00pm. I felt like I was back in college again, talking to Ralph for about a half an hour. I couldn't sleep last night and woke up to the dry heaves in the morning. It was a rough night.
Today, the 23rd, I get my stem cells back. Go to work you little buggers!
The stem cell re-infusion is a multiple step process. First I was hydrated for two hours. Then I had nine bags of stem cells placed into my body along with drugs that kept me very calm, if you know what I mean.
Well, Dr. Sanchorawala wanted the hydration to start promptly at 8:00am. We were here at 7:40am but the nurse didn't get here until about 8:20am and the hydration started at 8:30am. The reason for the early start is that I also have dialysis today and they want the stem cells settled before dialysis.
When Dr. Sanchorawala arrived and discovered how far behind they were she was furious! She gave everyone a piece of her mind. Anyway, the whole process went very well, I slept through most of it and even went for a walk afterwards.
June 24, 2005
I woke up with severe cramps in my stomach. I went to the hospital for a transfusion of blood and my Palifermin and Nepogen shots. I still have cramps. Natalie and I are sitting here just waiting for the doctors to arrive. Dr. Nordlinger came in an checked out my stomach, lungs and heart and left.
Next, Dr. Sanchorawala came in and once again was upset they were behind giving me the blood transfusion. They were suppose to start at about 8:30am but didn't start until 10:00am. We finished about noon and I feel a lot better. Now we are waiting for the Palifermin shot the test drug, Nepogen the growth factor and Aravesp for anti-bodies.
June 25 and 26, 2005
I can't remember too much about Saturday. I was feeling low most of the day. I went for a shot at 1:45pm and then to dialysis at 3:00pm. What a trip that is. They took too much out of me AGAIN! I have to holler louder at them and insist only a small amount of water be taken out each time and to keep my weight at 216 pounds.
Sunday was a trying day with the G shot and being drained by dialysis. I felt like crap all day. I had some diarrhea and dry heaves, but slept last night.
June 27, 2005
I am at 213.7 pounds and doing better. I still feel a little spacey and very weak. We went on a road trip to Newburyport, NH-what a nice place. I went there when I was back here for the 1996 Boston Marathon. It's like a Carmel of the east with lots of local shops and the ocean; a very nice visit. We had a soda at Fowler's Drug store where Bob Fuller went as a child (Bob is a friend of a friend who put us up during the marathon). I had one for Bob.
June 28, 2005
No weight off today at dialysis!!! I am very tired, very tired. I feel very weak, but manageable. I just have to slow down everything. I had a hard time showering this morning and had to shave while sitting in bed as I was very tired. They said it would be this way and my blood count would be very low, but my blood pressure is excellent and right at this moment, I feel normal.
June 28 Day Plus 5 to July 6, 2005
I haven't had the strength to write for some time now. It all started at day plus 5 and began to be a blur from there. They hospitalized me on July 1, 2005 and to tell the truth, I don't remember much of what went on and actually went over to the dark side for about two days. Talk about total disorientation. The feeling is impossible to describe. I stayed out of the hospital until day plus 8 and they (the doctors) were very surprised I lasted as long as I did.
The treatment is like no other. Only about 300 people have been done at my doses at BUMC. It's an out of mind and body experience. You are on the edge of being lost due to the chemo cleaning out your system and then WHAM, your new growth stem cells create havoc in your body. Sunday, I felt great, just great, but by Tuesday, especially after dialysis I was at a very low. Today I feel I am recovering.
July 7, 2005
What a difference a day makes! I feel much better this morning, no nausea or dry heaves and I am gaining strength. The hospital stabilized me yesterday with fluids, huge blood transfusions and platelets. I am almost feeling normal.
July 8, 2005
Last night I had the best dialysis that I have ever had while in Boston. I actually felt OK when I left the place. Stephanie cooked up some ravioli and my new found appetite let me eat a healthy portion. This morning was a wonderful cheese omlette again cooked by Chef Stephanie; she's a great cook and has taken good care of me. It's nice to have her here. All this talk about food again makes me understand that I really am on the mend.
Oh yea, I cut my hair off yesterday as it was all falling out anyway. It feels good.
July 9 and 10, 2005
I had a very quiet and restful weekend. Actually, it was boring. I want to be home. Something I ate on Sunday didn't agree and I spent the afternoon with Ralph. Other than that I felt good all weekend. We had Stephanie's great soup on Saturday and Sunday, nice rich flavor. We watched a movie Sunday night.
I am ready to go home. I can take care of myself, no problem. I am still very weak, but that will pass.
July 13, 2005
It's time Sue (my sister) takes me home! I had the final meeting with Dr. Sanchorawala and Kate Fisher. I'm almost sorry to see it is over-YEA RIGHT. The people her at BUMC are just the best of the best. They are truly your Angels. I saw Dr. Sanchorawala and Kate Fisher and had a great last conference. They will be sending me a complete history for my doctors back home.
July 23, 2006-One Year Later
It's one year later and I'm on an airplane heading to the BUMC for my one year check up. I must say I am very apprehensive about this trip. In typical Jack Moore fashion, I have worked my self into a worry that has given me hives. I don't know why, but that is my make up. This past year has been very challenging. I lost all my hair, dropped to 177 pounds, but kept a very positive attitude. I've become more spiritual and have welcomed that into my life. I've been surrounded by a caring family and good friends that have lifted my spirits during difficult times.
This is a very personal fight, don't ever forget that. You go through it alone in the final analysis. Late at night when you only have God to turn to, you realize your journey through this life is precious and short.
For the most part of this past year, I have lived alone, and actually it has made me stronger.
What has happened? Well if you recall, I lost my kidneys and told my skeptical doctors they would come back. At my three month check up, they were a little better, at six months in January, they were even better but my doctors were still concerned and thought I had no chance of regaining their use.
The miracle happened in February. Dr. Klug took me off dialysis as my kidneys had healed enough to be on their own. I immediately emailed Dr. Laura Dember my Boston Nephrologist. Her email back to me brought tears to my eyes. She said she was having a bad day, but my news changed all of that. I am glad to make someone so happy that helped me so much.
Now, let me say a little about the first year. Keep a great positive attitude. Stay spiritual, pray and be happy. Through all the trials, both health wise and personal that I have had this past year, I've kept a promise I made to myself to stay positive. I can tell you it's an unbelievable challenge, the challenge of your life. You just have to face whatever comes your way and stay on track.
I've gained weight, back up to 202 pounds. I'm riding my bicycle in 30 mile stints. I'm back at the gym lifting weights again. I'm riding my Harley (love it). I'm beating my golf game back into shape. In short, I AM NORMAL AGAIN.
Remember and Believe in Your Angels
My Mom's spirit was always with me, especially during the most difficult time. Mom was one of my Angels. My other Angels were my Dad who always gave me his unconditional love even though his age prevented him from directly helping me. My sisters Sue and Tina and brother Pat who dropped everything and came to stay with me, were all Angels. And then there is my very special daughter Natalie; who is my number one friend and Angel. And thanks to all the Angels that prayed for me.
And of course: THANK YOU BOSTON MEDICAL CENTER AND ALL THE ANGELS THAT WORK THERE!!!!
Contact Jack at:
916.768.1040 or email firstname.lastname@example.org