Over a year after cancer surgery ...
After six months of chemo ...
After over one year in remission ...
November 2006 - Bob and Bettye at FLIFF after two years in remission and just over four years post-surgery
September 2007 5 years post-surgery
Bettye, Bob & Big John McLaughlin
at the Tower Club Dinner honoring
USS Nitze CDR Robert Hein USN
Bob and Bettye at
Marti & Brian's Le Club condo
Bob and Bettye at FLIFF with
Apollo 14 Astronaut Edgar Mitchell
Bettye is now 3 years in remission
Miss Bettye at River Street Inn - Christmas 2008
River Street Inn - WorkStation - Christmas 2008
BLOG Updates on Bettye's condition from July 2002 thru the present time ...
From: Bettye Date: July 18, 2009 11:29:10 PM EDT To: Cris
Bob and Bettye
Sitting in a tree...
We need a renaissance of wonder. We need to renew, in our hearts and in our souls, the deathless dream, the eternal poetry, the perennial sense that life is miracle and magic.
- E Merrill Root
An intention and prayer...
... from Sharon4ht
May the peace of God and the freshness of the Holy Spirit rest in your thoughts, rule in your dreams and heal your bodymindspirit.
May you see the Presence of a higher power working in your life today in amazing and wonderful ways.
May your hopes and dreams be fulfilled and may you live and love well today.
May your world be expanded so that you can live your bigger story and bring to life the dreams that were planted in your soul.
Let us live the highest vision of what is possible for ourselves and for our world.
Have a blessed day.
Subject: Re: Checking in with you
Thank you for taking time to write to me. I can only imagine how difficult these days are for you and my heart goes out to you and Tom. At one time I met a patient at Moffitt that had her head shaved and a big scar along her head. As we talked, I learned she had had brain cancer surgery and come to find out the original cancer was in the lung. She looked better than I did at the time (I was green/gray from my chemo) and she was hopeful and shared my mind/body approach as well. I see people who appear to be on death's doorstep on some of my trips and see them later in much better shape. I know Tom is having a really tough time now because I remember when I was in chemo, my main goal for the day would be to just put one foot in front of the other (all the while seeing myself as well no matter how sick I felt), I visualized all my cells being in perfect order. I know cancer is a very complicated issue, but I just narrow it down by telling myself that cancer cells are just cells who have lost their way home and (in my mind's eye), I will help them find their way back to perfect order.
The logistics of cancer are tough as well. Waiting for the results after scans and heavy duty PET/MRI tests is always stressful. I will not know the results of my own recent radiation until August 10th. In the meantime I continue to "wear blinders": if you can remember the old work horses going down the rows in the field on the farm - They wear blinders so they will not step outside the the line they are suppose to follow. My visual blinders keep me seeing only wellness. When I go to the hospital with hundreds of patients sitting around in all states of treatment, I put on my blinders, saying "that is not for me, I am well", for which I am grateful every day of my life. Everyone has their own personal way of dealing with illness. Please let me know how Tom's tests come out, I expect the best. Even when something does show up, my doctors like to turn the computer terminal around so I can see what is going on and I say how interesting that is. I try to think of procedures as interesting; that technology has come so far just in my lifetime. I also think of new ways to "talk to my cells/body" to get back on track. Expect a miracle!
I am so happy you were able to take the trip to Lake Tahoe. It is so good for the soul and gives everyone a much needed relief just experiencing a change of scenery. We try to go the the mountains in North Carolina as often as we can. A lovely resort at Blowing Rock overlooks a lake. Seeing the fog roll in covering everything, or awakening to snow with the swans continuing to glide by on the lake is such a joy. We hope to go to Blowing Rock at the end of this month. It is a long trip however, with Bob doing all the driving. He is always there to take care of my every need. I have to make sure he doesn't get overly stressed. I can't imagine anyone who could anticipate my every need any better - I'm very happy. It really helps to be in this cancer journey together.
I am pretty much back to normal - my new normal. The heat this summer is keeping me in the air conditioning but it will not be long until football season and I am very happy about that. It's funny I measure my life by my birthday (this month by chance) and football season. When I was at my lowest point with my chemo and not doing well, I kept telling myself "I will be so happy to be able to watch the football games". And I did, almost every night, with great joy. The Miami Dolphins have Jason Taylor back this year (after the Dancing With the Stars fiasco).
I have become such a sports fan that sometimes I think the only reason I take the newspaper is to read the sports section. I receive great inspiration from reading about the athletes' lives and what they have gone through to get to where they are. It gives me courage to go forward with my life. My greatest inspiration is Alzono Mourning who played basketball with the Miami Heat. He is now retired but at the height of his career, he was taken down with a serious kidney disease and finally received a kidney transplant. He did return to play after his illness and every time I saw him play I wondered how he did it.
Just the other day, by chance, I read an article about his annual weekend-long parties to raise money for his now famous charity work, which has been successful for some time now. In the article, he talked about how the drugs he had to take after his kidney transplant drove him crazy and he wondered how he would cope with the challenge. He met the challenge by continuing his mind/body work. Then he said these magic words: "WHERE THE BRAIN GOES, THE BODY FOLLOWS". It was just what I needed to hear at that moment because that is really how I survived my devastating diagnosis - but sometimes in the distractions of day-to-day living, I lose my focus; reading this took me back to my center: IN MY MIND/brain, I ONLY SEE MYSELF AS WELL. I WOULD TELL MY BRAIN: I AM WELL (over and over) to the point that I didn't have to say it any longer, I JUST KNEW I was well.
As my doctor wrote in an entry report over five years ago: "she is very much aware of her condition and has a deep understanding of it" (but we were going forward). I do not think about all the technical things about cancer, that is for the doctors. I think of my cells. Our cells are there as our protectors, fighting our battles. I thank them and see them only as brand new. No matter what the scans say today, I only see "cells as new as a baby's" happy and healthy. As my doctor said, I am aware of my medical condition and I also know that everyone comes to the end of their life's journey in due course, but for today, this is what my mind thinks, sees, and does. As I see it, if you see a fork in the road, take it.
These words of encouragement I share with you if you are ready to receive them. As you can tell, I thrive on inspiring stories from wherever I find them. They warm my soul and keep me going forward. I hope you find stories that inspire you on this journey you and Tom are taking together. My journey has been an experience that I will always value.
My wish for you is to find your peace that will sustain you.
PS: I thought I'd share with you this address I gave to a Moffitt seminar
from over four years ago when I was at about 18 months of Stage IV...
From: Bettye Date: June 21, 2005 11:27:08 AM EDT
Subject: Testimonial for H Lee Moffitt Cancer Center Seminar
Good afternoon, my name is Bettye Wirt and I'm a lung cancer patient at Moffitt. I want to thank all the sponsors for this forum. I'm a patient of Dr Simon and yes, I am living with lung cancer.
My story actually began in August 2002. I had lung cancer surgery and I went back to life as usual.
Then on March 1, 2004, I was sitting in a Doctor's office awaiting results of tests. Even though he sped through the diagnosis, I was frozen in time... I said "what you're saying is I will not survive." He said "That's
correct." Let me be clear - you're saying I will not survive, even with chemo. "That's correct."
I then went to another Doctor and he concurred. I asked "What about this treatment?" No. "That treatment?" No. This began my journey toward death.
Then I came to Moffitt Cancer Center. When Doctor Simon came in to talk with me, by the end of the session I felt I could now go forward. He did not give me false hope, but he did have a plan. I entered his program.
From that day forward I started thinking about living again. Thank you, Doctor Simon. In October 2004 I received a clear scan. And on June 8th 2005 still clear. Now I'm on Tarceva. I live a normal life with Tarceva, Thank you.
How do I live my life with lung cancer? During my chemo I read and read. My husband and I were in a bookstore and he put this book into my hands. A journal "I Hope You Dance". I remember saying "Do you think I will?" I was very short of breath.
I used this journal to write passages from my books that I wanted to remember. During my worst times I would read through my journal over and over. I do this today.
Also during chemo, I decided to learn my lessons of Hope and Trust. At first I assumed everyone had hope. I came to realize that Hope and Trust are really big issues. I've learned that deep down I was AFRAID to Hope and afraid to Trust. I set about to learn Hope and Trust. Every time I felt particularly bad or felt very sick, my husband and I would say in unison - "Hope and Trust". It became easier and easier. I was beginning to Hope. I do this today.
Then it was time to address how I would think about my cancer. I've always heard about people fighting the cancer - arming themselves for battle. Because I do meditation, visualization and healing touch therapy, I knew that for me I wanted, and had to go, the way of peace.
I would sit in quiet and talk with my body. First I had to thank my body for being there for me. For sixty years I had blinked my eyes without thinking. I had walked, talked and enjoyed good health - taking it for granted. Now I would thank my body and be there for myself. We would go through this together. I do this today.
I also realized in a profound way that Doctor Simon was working with great dedication and time on my behalf. Now it was up to me to repay him by doing my part. I do this today.
What I didn't realize then that I know now is how much I would grow as a person and how thankful I would become for the lessons I have learned from my illness. I now see my illness as a gift. I would never have learned these lessons if not for my cancer.
During all of my inner work, however, I was dealing with a problem I didn't expect to have: peoples' response to my illness. I knew it was up to me to be positive but I had a need to talk about certain parts of my illness - some people would shut me down by saying "be positive". I couldn't talk with people about being ill. This made me angry because I would talk with them for hours about their big toe. One day I thought - what am I learning from this? I continued to communicate with my two girlfriends and my beloved husband. To all other people I would say "I'm doing very well, thank you." People looked relieved. I do know people don't know how to deal with cancer, and I lost my anger because I didn't have to defend myself.
Meanwhile, I was making progress physically and emotionally. Doctor Simon was taking good care of me, and my husband, encouraging me to keep learning.
Somewhere along the way I made a choice to se myself as well. I may die in six months; I may die in a year; or ten years. But for today, I see myself as well. It was very difficult at first, particularly when I was very sick, but I said it anyway "I am well". It became my mantra. It also became easier to say. "I am well".
One day I was talking with a lady who was also very ill. She asked me how I got better. I said "In a nutshell, I have a good doctor and I see myself as well. She said "Oh, I can't do that, I'm sick". I felt sad for her - but at the same time, I know people are where they are. She was, and is, on her personal journey. The perfection was for me to learn a very valuable lesson, it had to be said. In that moment I realized people make choices - consciously or unconsciously, with every breath one takes.
Every day when I get out of bed I'm at a fork in the road. I can take this road, putting one foot in front of the other and go forward. Even with tiny baby steps. The old Chinese proverb "A journey of a thousand miles begins with but a single step" is especially true for cancer patients. Or, I can take the road I was going down: I'm sick, I'm sick, I'm dying. Today I choose to live in perfection. When I was very sick, I was perfect... I was learning and growing as a person. Where I am today is perfect - I'm still learning, and for those of you who will allow me, I see where you are today is perfect. You are perfection because you are on your life's journey that only you can travel. When I die, when you die, it will be perfection as a human being. Death is also part of the grand plan of life.
My life, one year and three months after my death sentence, is better than I could have imagined. My husband has been there for me every step of the way. We have faced difficult issues and grown as partners. My husband is very brave, and I love him.
Doctor Simon, I want to thank you in so many ways but I don't want to cry - and I'm sure you had no idea I would talk about you today. I'll simply say: You make me happy. You inspire me to live and live and live.
I want to thank so many people at Moffitt, particularly Vicki, Kim, then Marge, Daniella, the nurses in CR and Infusion.
In closing, I wonder why at the end of our lives we wonder more about what life is all about. the other day I saw a card I found in a bookstore years ago. It read simply "I Give You Wings"... inside it said "FLY".
It's up to me ... to live my life's full potential, even in my life's final days. I want to soar - meaning I want to learn. This doesn't have to be done on a grand scale, nor with applause. It has been said: Small deeds are the greatest, because it shows who we truly are. A smile, a kind word, touching another person's life - will echo throughout eternity.
I say all this because so many people have touched my life in ways for which I am eternally grateful. During my darkest and most difficult times, someone extended great kindness, courage and peace to me.
May I breathe from my lungs into yours great kindness, deep courage and lasting peace.
Bettye Frye Wirt
On Jul 17, 2009, at 9:35 PM, Cris wrote:
Hello Bettye and Bob,
It has been awhile since my last email to you. I just checked your web site to see how Bettye is doing. Wow Bettye - what an experince you had with the Radiation. You are VERY brave and an inspiration for sure.
I have thought about you and hope all continues to go well.
My husband also had radiation treatments. In June we found out that the disease had gone to his brain. He had three spots with other suspicious places. Because of the numerous suspicious places he had to have Whole Brain Radiation Therapy (WBRT).
There were 12 treatments. So there was a commute involved over that period of time - but nothing compared to your journeys. You can only have this type of treatment once in your lifetime as it causes short term memory loss and a small decrease in IQ. He had a "honeycomb" type head covering made to fit his head tightly by screwing it into some kind of board on the bed of the machine. But thank goodness - it only lasted for a few minutes.
He had a triple contrast MRI today to check and see the results of that treatment. We will get the results next week. He is also scheduled for a PET scan next Tuesday to determine the status of the main disease in his lungs and lymph nodes. They thought they could eradicate all the disease in his brain - but if there is still something left he can have CyberKnife radiation treatment to get the rest. I don't know if he would benefit from lung radiation. They have not offered that yet.
Tom is now on second line chemo treatment with a drug called Alimta. He had his second round two days ago. Hopefully he will respond better to this than the first round of CarboPlatin and Gemzar.
He has lost a lot of weight as his brain tells him he's full and nothing tastes good but his stomach is growling. Go figure. They have prescribed something for him to take to stimulate his appetite so he will not be so weak.
We went to Lake Tahoe for the 4th of July. We were able to get a room that overlooked the lake and we could see the fireworks from the room. It was his wish to be there and see them and we were able to arrange it. However the altitude (6000 ft. level) took it's toll on his breathing (even though he's on oxygen) and we left the next day to go home (4000 ft. level).
That's it in a nut shell. When he wakes up from his nap I will read your latest blogs to him.
Take care and best wishes -
From: Bettye Date: June 22, 2009 9:45:23 PM To: Friends & Family
Subject: My first radiation treatment...
To my friends...
Thank goodness the feeling returned to my arms after my first radiation treatment so I can type this e-mail to let you know I am just fine. This is the process: squeeze into the body form which was made from lying with my arms overhead so long I didn't think I could stand another minute. Then today 4-technicians start with a full body size plastic with a small hole. They force it down over my head creating the first claustrophobia and my hair was caught down inside the plastic. I said just leave it at least it is out of my face. It does help that my head is out of the plastic but they had also put the stomach vise on and screwed it down so my lungs would stop breathing except for a tiny bit. Then the real clausty part comes. With the plastic tight around my neck, they started sucking the air out of the plastic and not only was I in a body mold which I was prepared for but now I was shrink wrapped into the mold and a plastic sheet. If I had ever had the urge to run, break out, or scream this was the no going back point, so I just laid with my arms overhead with no hope of putting them down... I tried every distraction I could but between trying hard not to breathe too much (didn't want the radiation waves to slip and hit a main artery nor cough and make it hit my heart) and wondering how much longer I would have to keep my arms overhead, I was too tense to try to relax. I think the entire process takes about 30-40 minutes. At times I could feel my heart beating in my throat and thought back to what Dr Dilling said the other day during the setup that he could still see my lungs moving and the tumor moving even though the stomach vise was so tight it hurt my stomach. With oxygen going in my nose I was assured I would get enough air. I kept having the urge to take just one deep breath. Trust me, from this day forward, I will always be grateful for each breath I take (break into song).
Well into the procedure, two of the girls would come in to discuss measurements, placements and the next step and each time I hoped to hear "we're almost done". Finally they came over and said we're all done- yeah!. By now, I am so weak I'm like a dishrag just waiting for my energy to lift me up. First they had to get me out of the plastic sheet-over my head-and my arms are still overhead and falling off. The small hole got stuck coming over my head (remember, my hair was still stuck). I said just yank it off - I was too nervous. Out and with assistance off the table and stumbling to dressing area. Couldn't move my right arm. Couldn't reach behind me to fasten my bra so one of the girls helped me and I was at last free. After a time, I felt good and glad to be back to normal. Then we got out of the car to go into Publix and the weariness hit me. So finally home and will rest very well tonight.
Bob is watching over me, as always.
Get up tomorrow and do it all again, four more times this week.
Thank you for thinking about me and I hope all is well with you.
From: Bettye Wirt Date: May 22, 2009 11:07:10 AM EDT To: Family & Friends
Subject: New developments in my cancer journey
I saw my new doctor at H Lee Moffitt Cancer Center on Wednesday and he suggested radiation for this new cancer (in the lymph node behind my sternum), so we spent an hour talking about the protocol but I still have questions today. I am accustomed to having doctors that know, and they know that I know my situation, but we go forward with the attitude that we know the statistics but we are forging ahead anyway. I like this and this is how I live my life.
When I deal with a doctor who needs to stick to cold-hard facts it takes me a few days to get my head back in the charging forward mode. He was very straightforward and that's a good thing since we are now dealing with rays of high dosage radiation. (chuckle) It's when questions come up in discussions that it throws me. One question was how do we find out if the lymph node is metastatic (spreading) if it is isn't biopsied, and he replied straightforward that I was declared metastatic in 2004 and once it is metastatic, it cannot go back. "You may go for a time but then it keeps returning." This is not how my mind works so it took me awhile to go back in my head to where I was before I saw this new specialist. Having said this, I will continue to tell my cells that we will stay clicking along being happy and normal. My cells have done a great job and I thank all six quadrillion of them for helping me along.
I continue to think of cancer as cells who have lost their way home: so the more cells I have to help the lost cells home, the better. I could not watch precious Farrah's documentary after seeing the promo when she said she thought often of a peanut size spot which had tentacles spreading all over her body. These are facts/statistics that I let my brilliant doctors worry about. My job, respecting all my body has done for me for 66 years, is to see things from "it is normal for my body to be running smoothly with all cells firing in just the perfect balance." It is not easy to do when doctors have no choice except to discuss the grim details. I am thankful every day for Dr Simon and Dr Bepler who chose to go forward no matter how grim the facts. I am also thankful for my new radiation doctor because I know he knows what he is doing. I do understand he has to cover specific details to make sure I am strong enough to start his protocol and to respond to my questions, he has to respond with medical speak... Farrah is so brave because I feel people need to see the real side of disease, when one goes from perfectly beautiful to a normal passage that people also need to embrace as our life moves on to things more important than any beauty could prove. God bless Farrah. A very special lady.
At this time, I am set up to begin the Stereotactic Radiation Therapy process on June 10th. I will have mega doses in a shorter period of time, but am assured I will have no side affects. If this will be the case, I will be very happy about this. Surgery is out of the question since I am "considered terminal" and he "wouldn't put me through the process of bone breaking surgeries, etc, since long term results are not expected." If I can't find a different procedure before June 10th, I will proceed with the radiation. The doctor is upbeat about radiation; he would be since that is his chosen specialty. I absolutely do not want to do surgery (the first two were bad enough) but I will talk with Dr Simon to see what his thoughts are. I have great confidence in Dr Bepler and if he recommended Dr Dilling, he has to be excellent for my case. The affected lymph area is small with irregular edges but does not appear on the PET scan as scattered, so that is where my mind/body thinking will go forward or back to: "I continue to survive and this will not change it."
I am assured that it will go well and will not take me down, so I'll go for that. My head (mind/body) is in a very good place. On top of all this, I have to be here for football season, once again, since Jason Taylor has returned to the Dolphins and I think I am almost as happy as he must be. As you may recall, Bill Parcells kicked him off the team last year because Jason couldn't leave Dancing with the Stars early enough to suit Parcells, so he was traded to the Redskins. He was sad and his fans were shocked. A poll was taken and 90% of the fans were happy to have him back in Miami. Isn't it wonderful when given limited time, people feel free to be ecstatic over the smallest things. Gotta love it.
I want to thank Bob for being there for me and being my biggest cheerleader. I don't know what I would do without him. He understands my thoughts and feelings as no other, and my gratitude is constantly focused on his good care.
Thank all of you for holding me in your thoughts and caring about me, I find it incredible...
Life is good... I am the sky... Nothing touches me....
From: Bob Wirt Date: May 14, 2009 3:05:46 PM EDT Subject: Re: missing you both
Things have been touch-and-go lately with Bettye's health. The prognosis has changed drastically over the past couple of months. Bettye and I were up at Moffitt Cancer Center in Tampa last Thursday through Monday of this week. She had some questionable changes show up in her March 27th CT scans, so they had her come back for a six-weeks' followup, rather than waiting her regular ninety days. Before we got there, though, she had a chest MRI at Broward General May1st, then backed it up with her CT scan at Moffitt this past Friday the 8th.
Based on the results showing significant growth of a mass in her post-sternal lymph nodes, we stayed over the weekend for a full-blown PET scan this past Monday morning back at Moffitt. The PET is definitive for cancer, as you know, and all of the prior radiologists have termed this growth likely metastatic, as has her primary oncologist at Moffitt. He says it's not the same cancer she's had for the past seven years, but a different type. After almost five years in remission, this has been something of a shock to us both, but Bettye is a very strong person and is dealing well with the news, as always.
We're heading back to Moffitt in Tampa next Tuesday thru Thursday for meetings with more doctors about how to deal with the new cancer manifestation. They want to do targeted radiation, and she's fighting them.
We've found a house we both like in Sun City Center near the hospital, and are contemplating purchasing it soon to give us both a place to relax while at the same time being within about thirty minutes of Moffitt. The 600 mile round-trips get a little old after awhile, not to mention the fact that she needs to be nearby for when any crisis occurs and she requires immediate attention.
We'll keep you posted.
Meanwhile, stay safe and stay well...
Bettye and Bob Wirt
From: Bob Wirt Date: April 9, 2009 6:50:43 AM EDT To: Cris Subject: Adenocarcinoma
Thanks for writing. Bettye is doing as well as can be expected after over five years of Stage 4 adenocarcinoma lung cancer. Her only real difficulty is the side-effects of her maintenance drug, Tarceva ®. Of course, the alternative is unacceptable. Her chemotherapy lasted about six months, from April through September 2004, and we found her worst days were the second third, and fourth days following Thursday chemo treatments. She'd be up and feeling better by Monday or Tuesday, then we'd drive back up to Tampa on Wednesday for another chemo each Thursday. Many weeks her platelets were too low, so following the setup procedures and a long wait in the infusion room awaiting bloodwork results, we'd head back to Fort Lauderdale and prepare to return the following week hoping she was strong enough to continue. We developed a routine of quiet and solitude as best we could, and always carried her meditation CDs along to calm her nerves and allow her visualization sessions to center her thoughts on her immune system in preparing her cells to receive the medications in a positive way.
We last saw her doctor at H Lee Moffitt Cancer Center at USF in Tampa on March 27th, and although her cancer remains in remission, they picked up on an inflamed lymph node behind her breastbone which the radiologist called "likely metastatic", and we have to return May 8th for additional scans. Our normal trips are every ninety days, so needless to say she has been concerned about the ramifications of this latest schedule change. We are on the final day of what has turned into a 2,100 mile trip following her last visit, having gone to Saint Augustine; up to Lake Wylie NC/SC to see her family; on to Blowing Rock in the NC mountains for three days at the Chetola Resort; back down to Lake Wylie for a few more days of family time; then a couple of days at the River Street Inn in Savannah and last night in Vero Beach FL; before heading home this morning to Fort Lauderdale and a backlog of work to do in the office. Relaxing to get away, something we normally do after each visit to Moffitt, but the clock always runs on keeping the customers happy and the bills paid...
We'll keep you and your husband in our prayers. His biggest part in this treatment regimen will be a calm and focused mental attitude toward the successful control of his condition. Stanford is probably as cutting-edge as Moffitt at the USF campus, and what we've found in Bettye's nearly seven years of dealing with her own lung cancer is that tremendous strides have been made and the attitudes of just a few years ago are changing based on clinical advancements in treatments and long-term maintenance therapies virtually unknown a half-dozen years ago. There is now real hope available to each of us, and it's not an empty, false hope, but one of real possibility.
Please keep us posted on his progress, if you wish, and stay strong as you'll find the job of caretaker to be a true avocation and closely linked to his well-being and recovery.
On Apr 8, 2009, at 10:58 PM, Cris wrote:
Hello there - I ran across your blog while I was surfing for information on Adenocarcinoma. I hesitated to write to you because I didn't want to bother someone I didn't know. But your blog has been both informative and inspiring. My husband Tom has recently been initially diagnosed with Stage 4 Adenocarcinoma but after a visit to Stanford for a second opinion - resulted in a revised staging of Stage 3 B. He had his first chemo treatment yesterday and seems to be doing well so far. I just wanted to check in with you to see how your wife is doing. .
Thank you for posting her story. It gives us hope.
Best wishes, Cris
From: Bob Wirt Date: December 6, 2008 8:36:17 AM EST
Subject: Our trip to Moffitt and Tavares FL
Bettye had a great visit at Moffitt as her CT scan and bloodwork were normal, so we're back on the emotional upswing good news brings with it. She met her new doctor for the first time as a patient, and seems to like him, but of course she still misses Dr Simon who cared for her over the first 4 1/2 years of her clinical trial. Dr Bepler is head of the department, so has had intimate knowledge of her complete treatment and progress over that same time period, making it an almost seamless transition so far as her ongoing care is concerned. He did indicate that her particular pleural form of cancer was tricky to monitor, but allowed her a ten day respite from taking her Tarceva ® so the next couple of weeks should be much better for her without many of the adverse side-effects of the drug. The Medication Vacations always raise her spirits and make the therapy easier to tolerate. Particularly since Tarceva ® is now up to $4,200 a month and her co-pay went from $20 on Blue Cross to $1,050 monthly with Medicare. Saving a little money also makes one feel better...
We're probably going to head over to Homosassa on Sunday to spend the night and visit the Wildlife Park, then return to Fort Lauderdale Monday evening sometime.
Bob and Bettye on the road
From: Bob Wirt Date: August 15, 2008 11:49:57 PM EDT
Subject: No beach Saturday for Bob and Bettye...
Greetings from beautiful Brunswick GA:
We settled into the River Street Inn Savannah about noon on Friday for a leisurely day of rest to top off our vacation, had a nice lunch at Skyler's then settled in for some soothing music and catching up on our newspapers, followed by some Olympic competition. About 6PM the TV flickered a dozen or so times and then died, along with the power in the hotel.
Turns out an underground transformer near the Hyatt had exploded, a fire ensued, and a dozen or so city blocks went dark. We ventured out and found the next block south had power and the Cotton Exchange had some great crab chowder, grouper fingers and a super oyster roll sub. By 8PM there was still no power at the hotel, but I did overhear the fire marshall briefing the hotel manager about how to run a fire watch for the ensuing 18-24 hours. Needless to say, Bettye and I packed in the darkened room, dragged our bags down the fire stairs, and we got out of Savannah by about 9PM or so, which is why we're in Brunswick.
Hope to make it to the beach Sunday AM, assuming everything runs smoothly from here on out. Since Mike Phelps just took his seventh gold this week and Dara Torres took gold in her event just a few minutes ago, things seem to be going our way once again.
Bettye and Bob
From: Bob Wirt Date: August 8, 2008 10:45 Subject: Bettye's visit to Moffitt
To our Friends and Family:
Bettye and I went to her regularly scheduled (every 90 days) appointment on Thursday at the H Lee Moffitt Cancer Center in Tampa. We received both good news and bad. The good news is that her CT scans were once again clear and she remains in remission. This makes it about four years now following her chemotherapy and the beginning of her remission. For this we are eternally grateful to Dr George Simon, who co-authored and conducted the clinical trial Bettye has participated in going back four and a half years to when she was first diagnosed with stage 4 adenocarcinoma lung cancer. It was a real shock at the time, since she had been told she was cancer-free following her thoracotomy in September 2002 and had even had a clear CT scan as late as October 2003, just two months earlier. No other doctor we consulted during the first frantic weeks of 2004 gave her any hope of survival, save for Dr Simon who welcomed her into his clinical trial and gave her the first glimmer of hope for some control over her cancer and the possibility of a long-term maintenance of her incurable, inoperable disease.
The bad news (for us) is that Dr Simon is leaving Moffitt in October for Fox Chase Cancer Center in Philadelphia PA. This is a major step up for Dr Simon in his research career and of course we are pleased for him, but at the same time we wish he could remain in charge of Bettye's treatment. We feel somewhat selfish in this regard, but know he has to move on and that all good things must end. It'll be a new beginning for us in the course of Bettye's treatment and we have every confidence that the physician he is turning Bettye's care over to will be every bit as competent and compassionate as has Dr Simon over these four and a half years. We'll hope to be able to keep in touch with him, however, and look forward to celebrating Bettye's tenth year in remission with him in Philly.
We headed north to Savannah from Tampa and have taken a couple of days for Bettye to rest and pull her thoughts together here at the River Street Inn. From here we'll head up to Lake Wylie NC/SC to spend a few days with her family and then push on up into the mountains to stay in the Cottage Suite in Blowing Rock NC and possibly take some side-trips around Boone. From there back to Lake Wylie; another night in Savannah; then back to Fort Lauderdale by the end of the week - unless we decide to stop in Saint Augustine or some other equally attractive and quiet spot. Whatever we do this coming week it'll be with an eye to helping Bettye relax and get some much needed rest. The stress has been tremendous lately and there's no better drug than a good night's sleep and some beautiful water and mountain vistas.
Stay well -
All our best ...
Bettye and Bob
From: Bob Wirt Date: May 23, 2008 1:46:25 PM EDT Subject: Heading South
We just left Homosassa Wildlife Park - Great day with the manatees, birds, alligators and all. May go by Caladesi Island, Fort Myers Beach or head back to Fort Lauderdale. We got lucky on a nice riverfront suite in Homosassa Riverside Resort last night, but the Memorial Day weekend might be problematic for room availability. Besides, we don't like being on the road on holidays. Too many crazies out here... We did have a great lunch today at The MargaritaGrill, riverside in Homosassa - As the owner Sam Piliouras says: "Eat here or we both starve..."
Things looked pretty well on Bettye's test results from Moffitt, although they had to increase her medication dosage as the tumors grew slightly since January. The Dr says it is probably nothing to worry about, but just wants to be certain she stays in remission.
Take care and stay well...
Bettye and Bob
From: Bob Wirt Date: April 24, 2008 Subject: Cardiologist's Tilt Table Test
The tilt table test went well. Bettye had some pooling of blood in her feet during the test and her blood pressure was hovering around 98/56 or so. They shot her with some nitroglycerine to dehydrate her during the test and to measure the effect on her heart. The Dr believes she needs her electrolytes boosted to bring her circulation back up to par so he's started her out on Emergen-C - an over the counter drink powder - rather than do anything more drastic at this point. He believes this will help to restore her circulation as well as boost her energy which has been a real problem lately.
Bettye and Bob
From: Bob Wirt Date: March 23, 2008 Subject: Re: Panama Cruise
Sorry I've been out of touch lately, but Bettye's had a very difficult time with her respiration, vocal cords and thyroid. We've been running from doctor to clinic to testing facility and back for months now. Her stress test came out OK, but the echocardiogram showed some mitral valve anomalies and ventricular regurgitation which may or may not be causing some of her more troublesome symptoms. There are days when she can't manage to stand for more than a few minutes and needs help in and out of her chair - other days she works out vigorously and seems almost her old self. The labored breathing, weakened voice and inability to sleep because of the pressure on her chest keep us up many nights until she finally falls back to sleep around 5 or 6AM. Makes it tough keeping a regular or productive work-week.
The tests continue, however, and she's scheduled with two more specialists before we leave for Panama. No answers so far, just a lot of bull about not finding anything. We can read the test results as well as anyone else and keep seeing indications of problems her thoracic oncologist has his concerns about. We can't seem to get the HMO specialists to take the matter as seriously as does Dr Simon up at Moffitt. We're just keeping on, as always...
Happy Easter... Take care and stay well, See you in a couple of weeks.
Bettye and Bob
From: Bob Wirt Date: February 5, 2008 To: Big John Subject: We're back...
Arrived home last night late and all is well and back on track. Bettye had her bronchoscopy yesterday and the doctor didn't see any obvious obstructions or growths. He did swab inside for microscopic exams to be performed on the cells obtained and will let her know later this week what they've found.
Miss Bettye cooling it at the beach around Valentine's Day 2008
She is pleased that there were no biopsies and was no serious damage done to her lungs during the procedure. She's a little sore and has lingering aftereffects from the anesthesia and soreness from the bronchoscope itself being down her trachea so long, but should heal readily. There was some blood in her cough yesterday afternoon and evening but the doctor says it will heal without complications.
Apparently they want to run some further tests on her trachea and thyroid, but we're going to let her rest up and heal before committing to more invasive procedures. She'd rather keep her lungs in one piece than risk further damage at this point, and I'd have to say I agree with her on that one.
She's resting now, but we hope to be back at the beach soon. She's got a cardiology appointment locally on Wednesday with my heart doc. I've got my own appointment to have a couple more pieces chopped off at the dermatologist (basal cell carcinoma I think - can't remember each of the little devils anymore) so it's hard to say when we'll soon you, but as soon as we can manage.
Take care, stay well...
Bob and Bettye
From: Bob Wirt Date: January 25, 2008 Subject: Trip to Moffitt...
Got back home about 6PM this evening and Bettye seems comfortable with the air quality from the new AC unit. Although, she is on the Medrol dose pak so we'll have to give it a week or so to see whether she's over her crisis. The pulmonologist from Moffitt called about 7:30 and wanted to know when we could come in for her bronchoscopy. Guess he just got the test results back from the other day... She's going to set something up with the scheduling nurse on Monday, so the timing of our return to Tampa depends on their availability in the bronchoscopy suite... I hope we expressed our gratitude sufficiently for your hospitality this week. Above and beyond. Thank you again... As team medic, I'm advising you have that cough cultured for problematic nasties before your head falls off...
We'll keep you posted on Bettye's health and well being. Stay safe,
From: Bob Wirt Date: January 24, 2008 Subject: Bettye's diagnostics...
Bettye had diagnostic bloodwork done last night at Moffitt - a TSH (thyroid-stimulating hormone, thyrotropin) blood test which screens for and diagnoses thyroid disorders... She's going back to Moffitt this AM at 7:00 for another diagnostic procedure, a Spirometry, pre- and post- Bronchodilator. The bronchoscopy procedures are all run on Mondays, so if they decide to do one based on the Spirometry, we'll be in Tampa a few more days. The doctor suspects hypothyroidism and is considering an echocardiogram to detect mitral valve stenosis or possible mitral annular calcification or aortic stenosis. Needless to say, she's a little worried about these new complications on top of her lung cancer.
Prayers and good thoughts will be of great comfort to her.
We'll be in touch and keep you posted... Gotta go -
Bob and Bettye
From: Bob Wirt Date: January 21, 2008 5:14:22 AM EST
Subject: Bettye's health and well-being
I'm writing this message to let you know that Bettye has been having a rough period of time over the past eight weeks or so. She has been coughing, sometimes relentlessly, for hours and days at a time. She awakens at night with a sore throat and cannot swallow easily. She says that the throat irritation extends down to her sternum, and that at first it felt like a truck on her chest but now has moved lower. She experiences what she terms body-slams and feels bad all over with pain and muscle soreness almost constantly.
She cannot take a deep breath without coughing, and then when she does succeed in breathing in fully, cannot expel the air easily. She describes her lungs as itching, scratchy, raw, swollen and sore, and says that her chest cavity feels as if it is stuffed with cotton. She is now losing her voice and can't seem to speak above a broken whisper.
When we were out of town over Thanksgiving she felt normal, even though the symptoms had been worsening prior to our leaving on our two-week trip. On our return the symptoms returned as well and we suspected a problem with the air in our condo. There has recently been cigarette smoke infiltrating into our unit from somewhere - and into our neighbors' as well, even though we are all non-smokers. We had taken to opening the windows at night to try and keep some fresh ocean air moving throughout the condo so she could sleep more easily, but it was only marginally successful in alleviating her symptoms. Our mornings on the beach seem to be helpful but if anyone is smoking within 500 feet of us, the wind seems to seer the stuff right at us and the air passages in her lungs swell and the coughing begins anew.
We had a new high-tech 14 SEER air conditioning system installed last Wednesday, which is supposed to scrub and cleanse the air in the apartment with UV light and RGF Photohydroionization (PHI) - but it is still not fully operational so we can't really tell whether it is going to make much of a difference. We're desperate to come up with something to help her breathe more easily. It's gotten pretty scary lately.
Her bloodwork always comes back perfect, (recent BP was 95/65) so we don't really understand her current condition. She has no energy, can't work out and sleeps during the day almost as much as I do. Now that's scary... She can't seem to get through the day anymore without constant napping, trying to catch up on sleep lost during her restless nights.
The worsening symptoms and lack of sleep have taken a toll on her nerves and are causing her a great deal of anxiety and stress. She's even gotten to the point that she can't meditate or perform her normal visualizations which always seemed to calm her in the past and set her off on a calmer, more enjoyable day. She seems to me to be in a real crisis over her inability to breathe comfortably, work out or even perform the most basic daily tasks without being overtaken by exhaustion and coughing spasms.
She became very concerned last Friday and drove herself to her oncologist's office here locally, but the doctor was unavailable and the nurses couldn't help her medically, although I believe they calmed her somewhat... She phoned Moffitt around the first of the year and they moved her appointments up from February 20th to January 23rd. I had encouraged her to make the change so that she would be able to fully disclose these matters and have them dealt with properly.
Bettye felt better about the rescheduling at first, but has been more agitated and worried in the past couple of weeks. I think she's more scared than anything, as I am, but she is looking forward to seeing her doctor on Wednesday for some reassurance and a possible evaluation of these troubling symptoms as they might relate to her anedocarcinoma. Her fear is that these sensitivities or whatever they are will disturb her cancer and throw her out of remission. We do understand that her non-small-cell cancer is not smoking related, but fear the deleterious effect of this new, heightened sensitivity can have a negative effect on her currently stable pleural nodules. In either event, not knowing whether they are associated or separate, unrelated matters has shaken both of us to our core due to the possible adverse impact on what has been her relative stability over the past few years...
She has always been able to deal with her situation in a positive manner and promised her lungs faithfully that she would take good care of them, but with what seems to be constant irritation from the air around her feels she has let her lungs (and herself) down in not staying healthier. Over the years she has avoided cigarette smoke and when she has been inadvertently exposed somehow she would often cough for days, or even weeks before the problem cleared itself.
We don't know whether this is something which would respond positively to some type of oxygen or inhalation therapy, or some other regimen which could bring some relief to what seems to me to be an allergy or sensitivity to airborne toxins or if it is actually related to her lung cancer. It may seem strange, but she always hesitates to (as she terms it) bother her doctor about these matters, as she doesn't want to impose on their time. I've told her that they need to be aware of her situation and they really are there to help her. She knows this to be true, but still often fails to bring these troubling matters up because she trivializes them in her own mind when faced with the clinic environment and what she views as their overwhelming responsibility to other people with what she sees as more serious problems than her own.
I don't know whether there are other tests which can be run to see whether Bettye's symptoms can be more fully evaluated and dealt with, or if her normal testing regimen will tell the story... Her upbeat feelings in October about her health and prognosis have made a sharp reversal and resulted in a frightening desperation and uncertainly about the future. She has always seemed to me to be strong and positive in dealing with her cancer, but I can see her doubts and uncertainty intruding over the past couple of months and am hoping a thorough reevaluation and addressing of her problems can help set her mind back on a more positive track and bring her some physical rest and relief along with her former peace of mind.
With best regards,
Bob Wirt on behalf of Miss Bettye
From: Bob Wirt Date: January 17, 2008 Subject: Tampa - January 22nd and 23rd
Thanks for writing. Time seems to have gotten away from us this year. I believe I mentioned in Homosassa that the doctor was so pleased with Bettye's condition in October that he had changed her to an every 120 days schedule from her 90 day routine. They had given us an appointment to return February 20th...
Things change though, as happens with her cancer, and she has been in crisis mode for the past month or so. Last week it got so bad with the coughing, wheezing, shortness of breath and lost strength and stamina that we called Moffitt and had her appointments moved up to 8AM-2Pm January 23 - next Wednesday.
We had a new high-tech 14 SEER air conditioning system installed yesterday, which is supposed to scrub and cleanse the air in the apartment 24/7 with UV light and RGF Photohydroionization (PHI) - real Buck Rogers stuff. Gotta do something to help her breathe more easily. It's gotten real scary lately. Her bloodwork always comes back perfect, so we don't really understand her current condition. She can't work out and sleeps during the day almost as much as I do. Now that's scary...
We're thinking of stripping out the carpets and having the concrete floors scrubbed and disinfected to try and remove any vestiges of whatever it is in here that's making her so uncomfortable. The new leather furniture helped when we put it in last summer, but something else continues to stress her. She seems better when we're on the road and gets worse when we're at home. We've been getting up around 2-3AM every night and throwing the doors and windows open wide until we leave for work each day to try and keep fresh air inside, but it's been of only marginal help with her breathing.
Should have moved to Blowing Rock back in 2002 when we had planned to. The cancer hit her that September, but at least we'd have been somewhere she seems to tolerate more easily. Might be the altitude or fresher air - hard to say.
Just got our car back yesterday from the accident in Savannah back in November, so at least we'll be comfortable hitting the road to Moffitt. We'll see what Dr Simon says next week, and hope for the best.
Our best to you both,
Bettye and Bob
From: Bob Wirt Date: January 8, 2008 4:42:57 Subject: RE: See you tomorrow...
Bettye is very tired today so we may not get to the beach until tomorrow. Yesterday was hectic for her... She's losing stamina and muscle strength daily. We've moved her appointment at Moffitt Cancer Center up from Feb 20th to Jan 23rd, but I may call and see if they can't schedule her even earlier. I think it's the drugs getting to her, but only more tests will tell...
Bob and Bettye
From: Bob Wirt Date: December 24, 2007 Subject: At the beach with the kids...
Sorry to leave you hanging yesterday. I meant to stay in touch about Bettye, but everything got out of hand. She went to sleep last night around six or so and I didn't know until this AM whether she would be up for a trip to the beach...
Santiago, Bob, Bettye, Amalia & Michele
Fort Lauderdale beats Edinburgh, Scotland
for great Christmas weather every time...
All went well this morning, but she got very tired around noon and didn't take well to the Gatorade I bought. I'm on my way to Publix for some Lentil soup for her as it's all she seems to tolerate. After that it's a nap and plenty of quiet time - hopefully she'll rally for Christmas.
Other than dinner Friday night, she hasn't kept anything down save a cup of lentil soup late yesterday afternoon. Even her beloved chocolate chip muffin didn't seem to agree with her today, and the hummus upset her stomach a little - much as she loves it. She wanted to write just now, but seems too tired. Maybe later... We'll stay in touch... Thanks for your concern - We appreciate it...
Bob and Bettye
From: Bob Wirt Date: November 29, 2007 6:49:08 AM EST Subject: On the road...
We ended up in Savannah last night after leaving Lake Wylie Wednesday afternoon with a planned arrival in Homosassa on Thursday. We're about 1,500 miles into our trip with another 750 or so to go.
Unfortunately, we had an accident on I-95 last night where a pickup in front of us hit a very large tire tread from a semi, flipped it up and into the grill of our car. We hit it at about 70 mph and rolled over the thing with a pretty good impact. Nothing seemed wrong with the car so we kept on down the road, but eventually lost the power steering.
Fortunately we got into Savannah and to the River Street Inn OK, but we're now scheduled with the local Chrysler dealer at 8:30 so they can check it out and see whether it's just the power steering line leak that I can see, or if there is other damage. It rides fine on the interstate, but steers more like a 3/4 ton on city streets.
Guess we're lucky the damn thing didn't come through the windshield instead of rolling under the car...
We had planned on getting to Homosassa a day early and scoring some R&R but that's not gonna happen. We'll be taking our beignets and coffee at Huey's on the river this morning before the dealership opens to regroup, calm our nerves and review our options for the rest of the trip. Hope to get to Homosassa by midday on Friday. Still intend to make the dinner cruise, but that will depend on the mechanics.
We'll keep you posted...
Bettye and Bob
Room with a view... container ships passing by at the River Street Inn Savannah GA - Thanksgiving 2007
From: Bob Wirt To: Friends and Family Date: August 11, 2007 4:26:22 AM EDT
Subject: Bettye's Clear CT Scan and Birthday in the NC Mountains
To Our Friends and Family:
We saw Doctor Simon at H Lee Moffitt Cancer Center in Tampa on July 25th, the day after Bettye's infusion port removal - which she referred to as a leap of faith as it was taken the day before she would learn the CT result. The port had been in place for well over three years and she is apparently no longer a candidate for chemotherapy so long as her remission continues. The port had become uncomfortable, having been implanted in her vein as long as it was, and the doctors agreed it should come out to avoid future problems. The CT scan was perfect, according to Dr Simon, so we turned north to Lake Wylie in the Carolinas for her week-long celebration of wellness with her family.
Three months of relief always turn into a week or so of tension as we gear up to make the trip to Moffitt for her quarterly scan. Good news always buoys her and a poor result sends us back to Fort Lauderdale licking our wounds. It's a real roller coaster, but we are blessed with her longevity and continuing excellent care provided by the good folks at Moffitt. Thanks, as well, to the beneficial effects of Tarceva ® and Bettye's own meditations and visualizations, which she feels strongly help her body to accept the treatments both spiritually and metabolically.
Bettye spent some time on the road corresponding with a girl in Arizona whose father in India is receiving gemcitabine and carboplatin, to be followed with Tarceva ® for his own adenocarcinoma lung cancer. She had been reading Bettye's WebLog and was comforted by Bettye's success in treatment for a case as close as it is to her father's own, and was also pleased to see he was receiving the same drug regimen from his doctors in India. It pleases me, also, that Bettye takes the care and consideration that she does in responding to other patients and caregivers, and that she in turn receives some gratification and comfort from having provided hope and guidance to others in her situation. Bettye is a very spiritual person and people do seem to respond strongly to her counsel.
Bettye enjoyed her ten-day vacation from Tarceva ®, necessitated by antibiotic therapy for an eye infection, and is now back on her regular 50mg/day. She seems to be tolerating the effects much better than before at the higher dosages of 75-150mg, and is faithful in her 6AM daily meds ritual for what has turned out to be lifesaving maintenance from Genentech's Tarceva ®.
We spent Bettye's birthday weekend in Blowing Rock in the North Carolina mountains. It's a place we both love, and she found herself a couple of nice birthday presents. With our method: she gets to shop; I present the plastic; and there are no returns... Enjoyable for us both because she gets just what she wants and there's no guesswork on my part. There was plenty to pick from at Tanger Shoppes on the Parkway, conveniently located between our cabin and downtown. A new coffee mug from Bob Timberlake's Gallery; ice cream at Kilwin's on Main Street; and a pleasant walk through the downtown shops capped our day Saturday before retiring to our cabin suite nestled up to the Blue Ridge Parkway.
A fantastic Sunday morning breakfast at the Dan'l Boone Inn in Boone NC was so incredible that we drove the twenty miles back up to Boone Sunday night for their equally gratifying family style dinner. The best country cooking I've had since they closed Aunt Fanny's Cabin in Atlanta a couple of decades back - except, of course, for sister-in-law Margaret's southern country-kitchen magic. I always manage to steer the car close enough to The Dan'l Boone when we're in the mountains that we're both overtaken with the irresistible urge to partake, and to hell with our diet - Daniel Boone doesn't serve tofu...
The July temperatures in Blowing Rock and Boone were in the high 60s to 70s and the crisp air was a bracing change from our tropical Fort Lauderdale Beach environment. Both extremes are good, each in their own way...
We turned back to Charlotte where Bettye had a Monday meeting with her sister's Rx providers, then headed for Savannah for our regular half-way stopover at The River Street Inn. Massive container ships floating by all night, looming over us like ghosts in the silence, they always seem to be close enough to reach out and touch. Breakfast downstairs of coffee and beignets with praline sauce at Huey's on the riverfront, then on to Fort Lauderdale the last day of July. Back to work...
Happy Birthday Bettye - click here for Bettye's Birthday Pictures
Bettye and Bob Wirt
From: Bob Wirt Date: June 12, 2007 Subject: SpringTime in Florida
To Family and Friends :
Bettye and I have had a pretty interesting several months, what with the doctors, clinics, meds and all. There have now been five clear scans (four CT one PET) following Bettye's cancer recurrence scare last summer. She has remained in remission since October and is doing much better on her medications, Tarceva ® particularly, which has served her well for over two years now. She has successfully slowly reduced her daily dosage from 150mg to 50mg currently, and is feeling much better than before. As she has told me, she no longer feels body-slammed every morning, but still has some minor rashes and blisters as side-effects of the drug. All in all, though, with the excellent care she receives from the H Lee Moffitt Cancer Center she remains a success story following three years of treatment in her Clinical Trial. We're looking forward to continued remission under Dr Simon's excellent supervision, along with the assistance Drs Victor Toledano and Dr Leonard Seigel here in Fort Lauderdale. Her next scan at Moffitt will be in about six weeks and we're anticipating continuing remission...
It is a truly strange phenomenon, however, that some old friends have faded away rather than face her cancer, and others have become closer and genuinely compassionate over the past four and a half years. Some understand, some don't. Some can't deal with mortality on a personal basis, others can. She understands. As Bettye says, she herself had subconsciously shied away from people with lung cancer and throat cancer specifically, until she finally put her own situation behind her and can now deal with the highly personal specifics a little more easily. I can discuss treatment, prognosis and other aspects of living with lung cancer, but only because my involvement with Bettye's case is as a caregiver, not a patient, and while it's painful the discussions are not as devastating to me as they tend to be for her.
She willingly counsels and helps others with all kinds of cancers, and hopes to be able to give even more future encouragement to those with lung cancer. She spent a long hour on the beach last week visiting with a friend from Cape Cod, whose husband's kidney cancer just metastasized to his lungs. Her empathy and words of encouragement seem to comfort everyone she speaks with and let them know they're not alone. Her biggest hesitation upfront was that she would give end-stage patients false hope. Some might believe that if she did it, their loved ones could do it also, just by being positive. Bettye tells me: don't ever tell someone with cancer to "just think positive", it sounds good but it's not really what they want to hear - too simplistic and somehow dismissive.
Not everyone can travel to Moffitt; nor can their head be in the same place as is Bettye's. Then, also, there comes a time when it is a person's time to go. Bettye is working through all of these issues so she can be of better assistance to others with lung cancer. True, it is incurable, but she sees past that part (or skips past it...) and goes on, expecting to live a long life. However, some people cannot deal with such a devastating crisis - everyone's at a different place in their own life's journey and Bettye totally understands this as well, as she has been there.
Funny thing about it is that Bettye looks so healthy and vibrant that most people forget her lung cancer history, and we really do appreciate that. She sees herself as well and refuses to look back. Staff at the cancer center really light up when they see her coming as she simply radiates a glow and incredibly contagious optimism wherever she goes.
I do notice, though, that some people we go out with become irritated at her efforts to avoid cigarette smoke. We went to a restaurant with friends recently, and after Bettye asked for a table "as far as possible from the smoking section", the husband turned to his wife and commented (in a stage whisper) "...now we'll have to listen to her bitch about the cigarette smoke all night". We don't remind them of her stage-4 lung cancer, but others don't watch her cough her head off for days or weeks on end, as I have over the years, following even short-term exposure to secondhand cigarette smoke. She is highly allergic, and sensitive to the carcinogens in the smoke and it really brings her down. Thirty-five years ago her doctor told her she might end up needing a tracheotomy to breathe, as her air passages swell so badly when she is around cigarette smoke. We don't say anything when such insensitivity happens as we'd rather enjoy the evening without the strife or hard-feelings which often accompany any explanatory rebuke, no matter how gentle. Guess we can't educate everybody.
... Our entire lives are not taken up with medical matters, thank God. We do spend many enjoyable early AM hours on the beach at St Bart's Coffee Co near the International Swimming Hall of Fame, meeting and chatting with different people from all over the world and from many different cultures and backgrounds - all of which feeds our fascination with life and its infinite variety. If you can't travel much, our tactic is to let the interesting people come to you - and Fort Lauderdale's a great place for it.
Current project? New hurricane shutters for the condo as the season is upon us yet again. Tropical Storm (not-quite-Hurricane) Barry slid by June 2nd with a threatening sidelong glance at us, just enough to make us glad the shutters would be installed soon. Fires all over Florida (200+), particularly some a hundred miles west of us near Naples in the Everglades raged throughout May to the point Bettye couldn't leave the condo or office without a mask for one exceptionally bad week, and only for short runs to the car. Who knew a swamp could burn? We're really bummed for the gators and beautiful wildlife who're suffering and dying over someone's carelessly discarded cigarette or match.
We always love our trips to Moffitt across Alligator Alley when Bettye counts gators along the north-side canal. The hour-long Everglades portion of the trip normally allows for from about six to as many as three-dozen gator sightings on the almost hundred mile run. Always makes our day when they're out in force. As Bettye says: it's the simple things in life, seen through childlike eyes, which give true happiness. Reminds me of the story she told me about her first trip to Florida to visit brother Ev and his wife Marg for summer vacation from the Mills Home orphanage some 55 years ago. She had been told stories of the beautiful palm trees with their coconuts growing all over Florida, and when they first drove into the state there were no palms. She thought she had been cruelly misled until some hours into Florida the palm trees began to appear and her faith was restored as they were more beautiful than she had ever imagined. We still love sitting under the palms on the beach most mornings, and I know now why she loves them so...
All our best,
Bettye and Bob Wirt
Click here for the rest of this 06/12/2007 posting
From: Bob Wirt Date: October 31, 2006 Subject: The continuing adventures of Bettye and Bob
To Our Family and Friends:
Following nearly two years in remission and about a year and a half on Tarceva ®, Bettye went on a medication vacation June 14th, where the doctors allowed her to go off her cancer maintenance drugs. As she put it, the drugs made her feel body-slammed every day without even the transitory pleasure of it having been the result of a few margaritas with dinner - Just the pain, none of the pleasure. She wanted to feel normal again, and for about six weeks she felt great. It was as if she had never had lung cancer and she seemed invigorated and infinitely happier. Unfortunately, her CT scan on August 15th showed what Dr Simon termed subtle changes in the pleura of her lungs where the cancer resides.
He put her back on the Tarceva ®, although at a half-dose of first 50 then 75mg daily, and scheduled a PET scan for September 21st. The PET scan came back clear and a month later on October 26th her followup CT scan came back clear as well, with the subtle changes gone and her lungs returned to a state of remission. As Dr Simon advised us Thursday, she is back to where she was in June with no evidence of metabolic activity from her cancer. Seems as if the drug was having a major positive effect in keeping her cancer suppressed so she's decided to make peace and live with it. The lower dose of the drug seems to be causing fewer side-effects and her spirits are relatively high because of the new, improved status of her lungs.
Hard to remember she's had lung cancer for four years now and has been Stage 4 since January 2004. I'm always amazed at her strength and determination. She's back to water aerobics and gym workouts, balanced by her daily meditation and visualization sessions. A certain calm and serenity has replaced the panic from August's adverse changes and she's back on track with her health and well-being.
Click here for the rest of this 10/31/2006 posting
From: Bob Wirt
Bettye and Bob
in their foot-massage studio, across A1A from St Barts Coffee Company,
photo by Larry Ott - Spring 2006
Date: June 25, 2006 5:10:53 PM EDT
Subject: Bettye Takes A Medication Vacation...
To Our Family and Friends:
On June 14th, Bettye and I travelled to H Lee Moffitt Cancer Center in Tampa for her scheduled quarterly CT Scan and bloodwork in followup of her treatment under the Clinical Trial being run by Dr George Simon. This is a trial called Molecular Analysis Directed Individualized Therapy (MADe IT) For Advanced Non-Small Cell Lung Cancer. She got great news (again) that the scan was clear and she remains in remission. After twenty-seven months in the clinical trial, and twenty-one months in remission, Bettye has been taken off her maintenance drugs and is enjoying what her care-givers cheerfully refer to as a Medication Vacation. Two months, maybe more, we'll see how it goes...
I had been hesitant regarding any changes in the status-quo, since she had remained in remission so long and seemed so outwardly healthy, but Bettye wanted a more natural lifestyle and a return to normalcy. Bettye was on the Tarceva ® daily for about fifteen months, and it seemed to be doing its job. While she has had good days and bad on Tarceva ®, on many days the unwanted side-effects of the drug were spoiling her quality of life and she was anxious to experience overall good health once again. After three months of talking it over, and with the concurrence of Doctor Simon, we decided to venture once again into uncharted territory by going drug-free as she had done briefly a couple of times in late 2004 and early 2005 (due to liver complications from Iressa). As to her finite life span, Bettye seeks quality over quantity, and her daily happiness is supremely important to her continuing good health.
Truth be known, now after almost two weeks off the meds, she's feeling great and beginning to enjoy life more. We're confident that her meditations and visualizations will help her to keep her immune system on track and that the bi-monthly monitoring by the incomparable Moffitt crew will ensure that the (stage IV) adenocarcinoma stays suppressed. If not, they're there to begin again with the meds, but Bettye and I remain confident that the drugs won't be needed any further. She chooses to see herself as well, and so do I.
After we got the good news at Moffitt, we headed north to Savannah GA once again to The River Street Inn, and then took a jog north to Fort Bragg NC to attend my Special Forces Association Convention for a few days. There were about fifteen-hundred ex-Green Berets there, mostly from the 1950s & 60s era, and Bettye came to understand I'm not the only weirdo who sleeps with a knife under his mattress. Not really, but then she's always had an appreciation for my love of the jungle and my other unconventional habits. (Jungle boots and Jungle knife... How I love that Jungle life...) It was inspiring that everyone stood at attention and all commotion ceased whenever Barry Sadler and Ballad Of The Green Berets blared over the loudspeakers. Patriotism, selflessness and devotion to duty are, hopefully, not a lost art... At least they're not among those most dedicated of warriors. I'm truly grateful to my ex-top sergeant from the Panama CZ, CSM Bob Mulcahy, for getting me involved with the SF Association last year and back in touch with my fellow soldiers.
Following Fort Bragg, we went on to Lake Wylie SC/NC to visit with Bettye's family for a few days, then back to Savannah and our return to Fort Lauderdale after what had turned into about a ten-day jaunt, rather than our normal week. Each time she gets the good news from Moffitt about her test results, Bettye feels incredibly relieved and has to head home to her family. A good investment of our time and a soothing break for her jangled nerves after the quarterly run-up to the life-defining CT Scans. We're looking forward to many years of clear CT Scans and her continuing good health and happiness.
Best wishes to each of you,
Bettye and Bob Wirt
From: Bob Wirt Date: February 23, 2006 To: Family and Friends Subject: Update on Bettye's Progress
It's been awhile since last June's update and I'll try to remember as much as I can of what's transpired in Bettye's treatment and condition, but there's been a lot going on weatherwise here (Katrina and Wilma mostly) which has kept us offline and scrambling to catch up. The storms have caused a lot of stress in our lives, stress being one of the things I try to protect her from. She meditates to relieve the stress, but even that sometimes can't calm her sufficiently. She goes to work most days because it gives her a sense of value and continuity, and takes her mind off her health problems. I wouldn't be able to run the business without her managing the books and keeping the bills paid since Alison left last May after nineteen years of doing the shipping and receiving. I've picked up that function in addition to the sales and marketing and Bettye has taken up the slack to keep us in business. But then, the stress of working even part-time has its own deleterious effects on her immune system. It's a real balancing act to keep her busy and calm at the same time. Of course we wouldn't work at all were it not for the necessity of keeping the health insurance coverage the company provides.
I went into the pharmacy the other day to pick up Bettye's monthly Tarceva ® prescription and the pharmacist, jokester that she is, said "That'll be $3,000 ... unless, of course, you have your new insurance card with you." Fortunately I did, handed it to her with some trepidation, and she returned with "How's $20 sound?" Good, of course, but it reminded me of how tenuous is our hold on the events of our lives. Were we not paying $2,000 monthly for the health insurance we'd be in real trouble. Hate to think of the consequences were we to be left without the coverages of that all-important policy. And that's just one drug in a litany of doctors, clinics and drugs the BC/BS HMO covers for us in this very trying time of our lives. Wish I could say it was foresight which got us into that particular HMO and prescription plan but it was just dumb luck and good timing. And thanks to a very professional insurance salesman, Jeffrey Sodikoff, who steered us to the policy back in June of 2002.
Next month we'll be heading to the H Lee Moffitt Cancer Center for Bettye's next CT scan and blood workups as has become our regular habit every ninety days since late 2004. The trips to the hospital in Tampa are both terrifying and heartwarming - terrifying on the way there, and heartwarming after we have received good test reports. It's a real roller coaster ride and the path from test to test is uncertain and foreboding. It's why I try to take her back to NC after each visit so she can revel in her family and deal with their health problems and related controversies, rather than her own. It's also why we try to take a day in Savannah on the way up and back to allow her some quiet rest in beautiful surroundings. For the same reason that each Thursday night following her Wednesday treatments at Moffitt back in 2004, I took her to the Edison House at Fort Myers Beach to rest and watch the dolphins playing near the pier at sunrise Friday mornings.
We had a real treat in November when Genentech, the firm which manufactures Bettye's Tarceva flew us both to San Francisco (first class, no less) the Thursday before Thanksgiving for a four day three night stay at the Mark Hopkins on Nob Hill. They were very impressed by her success on their cancer maintenance drug and by the Living With Cancer speech Bettye made at Moffitt Cancer Center last June, and wanted to feature her in their corporate promotion for Tarceva within the medical community. It's great to hear from her doctors how well she's doing, but having the drug company react so favorably to her impressive health result is just so much icing on the cake.
They put us up in a beautiful room overlooking Huntington Park and the Union Pacific Club. We rode to the Top of The Mark each morning at 6:30AM (while still on Florida time) and were seated at a cozy table to the north of the hotel with staggering views of San Francisco Bay, the Golden Gate and Oakland Bay Bridges with Alcatraz Island taking center stage at each day's sunrise. And what a buffet spread - not on the old diet, but we partook nonetheless: Bettye from the dim-sum and assorted fresh fruits; and I from the fried dead meat selection. Friday morning, Bettye and I walked the short couple of blocks through the park over to Grace Cathedral and took a long walk through that very beautiful church, after which we hiked down the hill to Union Square to visit Williams Sonoma and the local Borders Books and Music. They were somewhat different from the ones we live virtually next-door to, but then, what the heck ...
We rode back up to The Mark on the Powell Street cable car as far as California Street (about five blocks or so). The gripman was very kind and explained the mechanics of the cable car system to Bettye as we stood on the back deck, and as we debarked advised that we hadn't ridden far enough to be charged for the trip. Auntie Dawn brought Ami and Roopi over from Berkeley for dinner and a movie Friday night, and the kids actually had a good time at "Wallace & Gromit in The Curse of the Were-Rabbit", considering their disappointment at the latest Harry Potter being sold out on that opening night. The Genentech photography session took just a couple of hours on Saturday and we crossed the bay to San Leandro for an early Thanksgiving Dinner with family at my Mom's house (limo ride courtesy of Genentech). Nice people ...
We had a great trip to the H Lee Moffitt Cancer Center December 21st and Bettye's CT scan and blood work came out clear yet again (as was the case in September as well), giving her fifteen months of remission following chemotherapy treatments in 2004 for her adenocarcinoma lung cancer. As has become our routine following the quarterly checkups at Moffitt, we headed north to Savannah for Wednesday night at the River Street Inn, then on to Lake Wylie straddling the South Carolina / North Carolina line for Christmas with Bettye's family. Monday night we went back to River Street for some quiet time, then back home to Fort Lauderdale on Tuesday to catch up on shipping orders and closing out the year's business.
Funny thing happened as we were leaving breakfast at Huey's that Tuesday AM. Two couples came into the restaurant, one of which was outfitted in Genentech jackets (his black and hers green) just like the ones Bettye and I had received on our photography jaunt the month before. We introduced ourselves and discovered his wife had been the beneficiary of lifesaving treatment of a stroke through use of Genentech's tPA, and that they had also made the San Francisco trip the week before ours. They were on vacation from Massachusetts and the circumstance of our paths crossing in the basement of our favorite hotel on the Savannah River was an amazing feeling. Nice people who had also received the benefit of good health from Genentech research.
We've given some serious thought to relocating to the west coast (of Florida) to be closer to Moffitt. We'd like to be within a thirty minute ride of the hospital and the south Tampa bay area around Riverview and Ruskin seems to be comfortable and convenient, although we're still looking north near New Port Richey and Tarpon Springs. Hate to leave Fort Lauderdale after twenty-three years, but reality intervenes.
Bettye's state of mind is fragile, though her heart and will are strong. We don't know how much time she has left and we live from day to day assuming the best and visualizing her as well, not ill. To see her today, no one would imagine that she has terminal cancer, and frankly we are glad for that as she doesn't seek pity or condolence. She just wants to live her life in happiness and contentment, and it's my job to see that she is comfortable and loved. Stress and controversy have a deleterious effect on her health and we both try our best to keep her calm and in comfortable, familiar surroundings.
Looking forward to yet another great year in Paradise...
Bettye and Bob On The Beach
From: Bob Wirt Date: June 15, 2005 Subject: Blog Update For Family and Friends
When Bettye was taken off of Iressa in January because of the adverse side-effects, she went without drug treatment for her lung cancer for several weeks. However, in order to keep the cancer in remission Dr Simon at Moffitt put her on a different drug, Tarceva. It apparently works in the same manner as Iressa, but with fewer side-effects and greater efficacy.
"Tarceva is designed to inhibit the tyrosine kinase activity of the HER1 signaling pathway inside the cell, which may block tumor cell growth."
One tablet a day is the regimen, and Bettye faithfully fulfills her obligation by taking it at exactly 6:30AM. The bad effect of the drug is that she develops skin rashes which can only be defeated with combinations of three different skin cremes used in precise sequences. Her liver enzymes are back to normal though, and that's one positive result the doctors were looking for.
The main problem with the rashes is that they're often triggered by physical exercise, which means that every time she gets back in the gym with any degree of seriousness, the outbreaks force her to stop. Slow and steady, that's the rule now - and when she takes it easy, her health is more stable.
No one who sees Bettye believes she is, or was, sick. She looks great and feels almost great. Like she says, she sees herself as well. Her positive mental attitude has a great deal to do with her body's ongoing ability to stay well by boosting her own immune system in concert with the drugs. Negativity can defeat even the most efficacious drug and her positive outlook seems to bolster the drug and its effects on her cancer.
We've been back to the H Lee Moffitt Cancer Center every sixty days since October 2004, and the scans continue to show no presence of disease. As Dr Simon told Bettye when she asked when her next PET Scan would be: "There's nothing there to scan." So long as the CT's show no metastasis we're home free. Bettye remains in the followup treatment phase of her clinical trial in that the chemotherapy was designed to knock the cancer down, which it did, and the Tarceva is designed to keep it down. So far so good.
It was when we learned the retail cost of the Tarceva is $88 per tablet that I realized I'd made a mistake back in 1976 by getting out of the pharmaceutical business. Just kidding. Greater than normal markups were just as common in the industry back then, with the explanation being that the profits drive the research. Genentech, manufacturer of Tarceva, seems to be very forthcoming in helping people get their products at discount if their prescription plan falls short. check: Genentech Patient Assistance Program We once again are truly thankful for our BC/BS of FL Health Options HMO plan which has seen us through our several health problems over the years. It's expensive but not as expensive as going bare would have been.
Bettye has been asked to speak next week at a seminar for new cancer patients and give her testimony regarding her own treatment and ongoing success in the clinical trial. She's very excited about going back to Moffitt and sharing her experience with others just beginning their own journey. She's glad also that her part is scheduled for just 5-10 minutes as she tends to get a little nervous speaking publicly before large groups. I told her I'd be right there for moral support - easy for me since I don't have to speak.
We got a real laugh out of The Hitchhiker's Guide to the Galaxy (remember, laughter is the best medicine) and Bettye and I both truly enjoyed What The Bleep Do We Know? for some interesting insights into quantum physics, relativity and the space-time continuum. Gotta keep the old brain cells stirred up to maintain their fine-tuned interconnectivity.
Bettye's next CT scan is scheduled for early September. Thanks to everyone for your prayers and good wishes. Know that we are grateful for each and every kind thought and prayer sent our way.
From: Bob Wirt Date: Fri Feb 11, 2005 Subject: Update On Bettye's Current Prognosis
To our friends and family:
Bettye is doing much better of late, and has even been able to get back into her beloved Zoo Health Club for ever-increasing workout sessions since having come off the chemotherapy and having finally gotten the OK from her doctors to start exercising again. A year out of the gym was almost worse than the chemo ... Not really, but she felt that way throughout most of November and December. Her lung cancer was complicated by the pleural effusion which had been leaching fluid into her chest cavity and collapsing her left lung to the point where breathing was her most difficult activity of each day. The pleurodesis they performed last spring glued her pleural membranes statically to her lungs and was problematic in that it could have torn loose and started the fluid buildups again. Fortunately she was cautious in her movements and did nothing to disturb the status quo throughout her therapy. The doctors describe her life expectancy as finite, but then we guess that applies to everyone in the long run.
Her PET scan in October showed her to be free of metastatic disease processes, which I suppose is a fancy way of saying the cancerous tissues were gone. This result was more than surprising to us, not to mention to her various doctors. We went back to the H Lee Moffitt Cancer Center on December 29th for a followup CT scan which showed her to be totally free of the disease. Dr Simon at Moffitt, who is head of thoracic oncology at the Cancer Center, indicated that his protocol would have predicted no more than 1-2% of his study subjects could have achieved the result Bettye did. He kept saying things like amazing and incredible, which we took to mean she had done much better than expected on the chemo regimen.
As I mentioned in October, she was put on Iressa tablets daily to keep the disease suppressed, but unfortunately Iressa took a bad rap in recent drug trials and is apparently going to be taken off the market. Bettye also was experiencing some increases in liver enzymes, which is an indication that the drug was causing liver damage so she has been off medications for some weeks now and is taking blood tests every couple of weeks to track her situation. As the doctor said, we're flying blind at this point. We are scheduled back at Moffitt on March 31st and are cautiously optimistic about her receiving yet another good scan result. We seem to relax after the scans, but then the tension begins to build again the closer we get to the next one. It's a real roller coaster ride - but without the fun part.
I'm not certain what caused Bettye to go into remission, to quote Dr Simon again, but the medical professionals are confident it was the drug treatments and chemo. Bettye feels as strongly, and I tend to concur, that it was her own state of mind which allowed her to survive this long. Her meditations, healing-touch sessions and positive mental attitude seem to have had as much to do with her immune system working so well for her as did anything else she underwent last year in the way of medical therapies. It's probably a combination of superior medical treatment along with an excellent state of mind/body awareness which has brought her to this stage of the game.
Bettye tells the story of an acquaintance who approached her a few months back who also suffers from cancer, and was interested to know how Bettye managed to be faring so well given her incurable/inoperable diagnosis. Bettye explained to the woman that she chose to see herself as well, rather than sick, and that her mental attitude helped in her healing. The woman looked her right in the eye and in all seriousness said: "I can't do that - I'm sick - I have cancer". The old self-fulfilling prophecy at work. We wish her well and pray for her own recovery. As for Bettye, she still chooses to see herself as well and remains so, likely as a direct result of her belief.
Thanks to each of you for your prayers and good wishes. We'll let you know the outcome of Bettye's upcoming tests. We have every confidence she will continue on her path to health and well being, God willing.
Love to all, Bettye and Bob
From: Bettye and Bob Date: Fri Nov 26, 2004 20:38:52 To: Deanna
Bob and I were happy to hear from you and so pleased you're so close by for your kids ... and in AZ We miss the mountains of North Carolina and were just thinking (while sitting on the beach) about being there last year with the snow. Sure enough the news from home is that it's snowing in the mountains on thanksgiving day this year ... beautiful.
We have had a tough year. My lung cancer returned in February so we were going every week to Moffitt Cancer Center in Tampa. I stopped the chemo and went on Iressa which is a tablet taken once a day. I'm doing better than any of the doctors expected. I am doing a lot of mind/body work which helps me in more ways than one. I expect to continue to do well.
The beach at St Bart's is still pretty much the same. We see Amy almost every day and saw Janet last weekend. We don't see Janet very often, so it's good to see her. A lot of people are moving to Delray Beach. Fort Lauderdale is in a development madness and high rises going up everywhere and speaking of real estate - prices have gone off the map here with the price of new condos starting at $500-easily $1 million. Along A1A all the mom-and-pops are going and turning into monsters that have to be filled ... it's out of control growth with no end in sight. We're thinking of moving to a smaller town perhaps on the west coast of FL.
I'm happy to be alive this Christmas and also for football season. We even got to watch football yesterday during the thanksgiving dinner ... after the comedy of errors all day I saw the full moon last night and decided that was it. It was so funny, I slipped twice in the bathroom hurting my foot; then Bob was moving the rack in the oven at our friends house and her glass cookware full of sweet potatoes crashed to the floor; then I turned a full bottle of olive oil over onto a pretty tray ... thank goodness it didn't break and no olive oil spilled. We were laughing about it at the beach this morning trying to stay warm. We walked out expecting 80 degrees and it was 57... so it felt like Thanksgiving.
It's good to hear from you. Have a wonderful Christmas and think about all your friends in Florida. Bob sends his love.
I hope (I'm sure she is) Celeste is happier in AZ ... such a sweet sweet dog.
Love, Bettye and Bob
Season's Greetings from the desert!
Hi All, Hope this holiday season finds you well and at peace in your world. All is well with me here in Arizona. I continue to be amazed at this place and that I'm actually here. I'm enchanted by the mountains, sunsets, giant Saguaro cactus, the nighttime skies and the incredible energy of this place... Sharon
From: Bettye Date: Thu Nov 25, 2004 12:11:15 To: Sharon4ht
This is a rare thing for me ... sitting at this computer actually writing. You were on my mind today and I want to wish for you a happy Thanksgiving. I hope you will be with friends or walking in the mountain I'm looking at on my screen that you sent. I have to cook today and now I'm sitting here thinking if only we had said no to the invitation and gone out to eat. Now that would be easy. I understand it is snowing in the mountains of North Carolina that would be so cool; it is a long drive for a little snow. We went to the beach first thing this AM with the rain and cool weather. We always love cloudy weather but feel sad for the tourists who travel for miles for the sun.
I talked "your ear off" the other day and forgot to tell you that I had gone back to the Healing Arts at Imperial Point.
It doesn't seem the same without you. I even walked down to Dottie Mancinis' office. Of course she wasn't in but this lady named Lorna came out (she looked a little stiff to me) and I told her I wanted to make sure Healing Arts would remain @ Imperial Point to which she replied "Healing Arts isn't going anywhere" So for what it's worth they try to give the impression that all is well ... I hope. I went for a session with Sharron for reflexology and lymph drainage. I was pleased with the results. I want to go next to the hypnotist to conquer my fear of cooking. I cooked for 25 people three times a day all those years in the orphanage and although I didn't mind at the time, I seem to be frozen when it comes time to put the kettle on the burner now. So I'm looking forward to that. Sharon Gruber has been of great help to me and I will continue to go to her as well ... the noise around her office keeps me from total relaxation that I experienced during my sessions with you; but the session she did involving the vibration of the cells (vibration sounds from bowls) is of great interest to me and I'm looking to explore it further. Sharon is spiritual as well so it is a pleasure for me to know people who don't think I'm weird and I love knowing people who know so much more than I so I will continue to learn and become an even deeper thinker.
It has been a privilege for me to know you. Every time you talk to me I thank God that you came into my life. I don't think I told you this: when you left the Fort Lauderdale area I tried to remember the words of my most wonderful psychologist (haven't found a psychologist ... since him ... he taught me I was a person). He said his goal for me was to see me stand strong without his therapy (instead of depending on him for years) and I did grow strong enough to go forward in life. It still doesn't keep me from missing the joy of talking ... life, why we're here , where we're going, how to get there ... with you. Not to mention the body. I realize now more than ever that many people don't even think about the thing (their body) that they "drag" around and if it gets sick drag it to a doctor to fix. I love doctors but I want to know more (about my mind/body connection) than 99% of them know ... It started with your sessions, then the movie "What the Bleep..." then the book "Molecules In Emotion" by Candance Pert. It's so strange how things happen so quickly now ... Bob's daughter had told me to read the book 2-3 yrs ago and I had forgotten about it until it was referenced in another book I was reading so I thought it's time to buy it ... then there was Candance Pert in the movie "What the Bleep..." it's as if the Universe is saying "now that I have your attention ... do this, read that. Likewise the wonderful book you gave me "I Will Not Die an Unlived Life" put my mind in gear like never before. I could go on and talk your computer to death, but I'll
close by saying: this Thanksgiving I am thankful, yes, for Dr Simon and Dr Toledano and Dr Seigel, but most of all I am grateful for a caring, wonderful, healing, advanced soul named Sharon Stahelek. When I think of you I think of my favorite -of-all-time-line from the movie Gladiator: "What we do in this lifetime echoes throughout eternity". What you did for my soul's advancement will bless you more than you can ever know.
Bless your heart, Bettye
From: Bob Date: Thu Oct 21, 2004 To: Kris Subject: RE: Kevan
We were very sad to hear the news about Kevan('s leukemia), but you all seem to be managing the situation properly. We will pray for him and for all of you also, since we well know the toll his health problem will take on his caregivers. It's a terrible thing to happen at such a young age, but then from what you say the form is treatable and the prognosis not as bad as it could have been. Kids seem to be remarkably resilient. We'll hope for the best.
Bettye is doing much better since her chemotherapy ended six weeks ago. We spent over six months driving from Fort Lauderdale to H Lee Moffitt Cancer Center in Tampa every Wednesday and returning on Fridays (570 miles roundtrip) for her Thursday treatments. Her adenocarcinoma is incurable and inoperable, but the clinical trial she was on seems to have successfully stabilized the lung cancer. It won't disappear, but hopefully will not advance either. They put her on Iressa tablets which she now takes daily to keep the cancer suppressed and we go back to Moffitt for PET Scans and CTs w/contrast every 60-90 days for monitoring. Although the cancer is still active, there is no tumor - just sloughing of cancer cells from her pleura into the left thoracic cavity.
We co-pay ... for the Iressa ... Our HMO pays the rest and, knock wood, has not failed to pay one bill so far. Guess you do get what you pay for after all. Without the BC/BS of FL this would have broken us for sure. However, we are definitely trapped here in paradise since the policy only covers treatment within Florida and is non-transferrable. We had planned on moving to NC so she could be near her brothers and sisters, but of course that's impossible as she is now officially uninsurable. Also, we can't even retire since the insurance is a corporate policy with coverage including Alison who had non-Hodgkins Lymphoma about five years back and still relies on the followup care she receives to be certain her cancer doesn't return.
Bettye worries that she has a $1/million lifetime cap on her coverage and that the bills seem to be eating up what at one time seemed like a pretty big limit. I try to steer her thoughts to other things less stressful and more relaxing. She takes great comfort in her weekly Healing Touch sessions and daily meditation. Also, she's able to exercise a little, but there's a big difference between the 2-3 hours every other day from before and the 10-15 minutes she can manage now. She does have the faith though, and that's what counts.
Got to say I don't remember knowing so many people who had cancer twenty or thirty years ago. Seems like it's everywhere these days. The etiology of so many forms of cancer seems to be environmental or associated with our food supply. What was it Dupont used to say - "Better Living Through Chemistry"? But then, thank God packaged foods can sit on the supermarket shelf for several years and still be edible. Comforting to know we're killing ourselves for the sake of the bottom-lines of so many multinationals.
Allaha Ismaladik, Love, Bettye and Bob
From: Bettye Date: Sat Jun 26, 2004 To: Claudia & Sid Subject: RE: We pray for the both of you!
Dear Sid & Claudia
The good news is that I am still on earth. I should have responded to your heartfelt and gracious e-mail long before now because your concern did touch me deeply. As you can imagine after not being able to find one doctor who could give me any % of hope, I was on a mission against time to find someone to at least extend my time here on earth. I have settled on a doctor at the Moffitt Cancer Center in Tampa. Bob and I do have to travel every week to Tampa but thus far it has definitely been worth it. As you can imagine my story is now longer and my journey in this life has taken me on a completely difference path than I had imagined. I have already learned extremely valuable lessons and will continue to learn as the journey unfolds. From the medical standpoint, chemo had been the only alternative offered ... this is the choice I have made along with other personal discoveries I will continue to pursue. I feel I am on more stable ground than when I started. I had medical problems that had to be resolved even before I could start the chemo so you can hopefully forgive me for not responding sooner. Your kind letter had sustained me along with prayers for which I am eternally grateful. My first CT Scan was done this past Thurs in Tampa and it looks very promising so I will continue this journey on a positive note. Again thank you for thinking of me and I will be grateful for your continued prayers and concerns. Please feel free to call or e-mail any time. We are normally OFT each week Wed PM thru Fri PM.
From: Sid & Claudia Date: Fri Apr 2, 2004 Subject: We pray for the both of you!
Dear Bob and Bettye,
we just heard from our Saint Sebastian Prayer Circle that Bettye is again ill. We are very sad to hear that and we want to assure you that from now on we have Bettye and you Bob in our daily prayers. We have placed a request for prayers into our Catholic Network at http://heavenlynetwork.com and we ask our Blessed Mother Mary, all the angels and saints, especially Padre Pio to intercede on behalf of our dear Bettye.
Especially we ask for a healing and if there is anything which until now was not asked for we ask it from the bottom of our hearts: "Please Father in Heaven, please be merciful to our Bettye.
We also include you, Bob in this difficult time and we ask especially for strength and love. We want you to feel that you are not alone.
Please, if there is anything else we can do for you besides our heart filled prayers let us know! We don't know where you and Bettye are but we want to let you know that we love you and that we are with you.
All our love and God bless you both
Your friends, Sid & Claudia
From: Bob Date: Sat Jun 26, 2004 To: Sue & John Subject: Bettye
I happened to run into your (ex) neighbor Carolyn in the lobby today and it reminded me we hadn't heard from you guys in awhile. Thought I'd drop you this note to update you on our situation.
Bettye had been having trouble breathing during December and January, and found she tired easily and had to stop exercising. As you can imagine, going from a two to three hour workout regimen four days a week to almost nothing was a great concern to her. She had her semi-annual cancer checkup last October and was clear, as had been the case for the prior fifteen months, but there was a small cyst on her liver which the doctor ordered to be reexamined in January. When the liver scan came back it showed the cyst to be of no consequence, but also revealed a pleural effusion in her left chest cavity where her upper lobe had been removed in September of 2002.
Long story short: testing showed the cancer to have returned and after a couple months of further tests and interviews at various cancer facilities, and following strong recommendation from Dr Dennis of the NIH in Bethesda, Maryland, she settled on the H Lee Moffitt Cancer Center in Tampa for treatment in a clinical trial being run there by Dr George Simon. They stopped the fluid buildups in her lung and began chemotherapy with targeted drugs based on microscopic evaluation of her cancer's cellular structure. This was not an easy task, as she has no tumor, just tiny nodules on her pleura which were shedding adenocarcinoma cells into the effusion. The cancer was contained, but nevertheless malignant.
She's been in chemotherapy for about eight weeks now. We drive to Tampa each Wednesday afternoon; she receives testing and therapy each Thursday; and we stop over in Fort Myers Beach Thursday evenings, returning home just after lunch each Friday. The process has been draining but also rewarding as she had her first followup evaluation via CT scan two days ago and they found her nodules to be shrinking and the cancer to be in retreat. She reports back to Moffitt on Thursday to begin a new six-week round of chemo with high hopes that the results will continue to improve.
Anyway, our whole situation has been changed by this new development as we find our planned re-location to North Carolina is impossible since Blue Cross won't cover her outside Florida, and of course if we try to change carriers she's subject to the pre-existing condition bugaboo which means no coverage anywhere but here. We've considered relocating within Florida but the project seems somehow unmanageable with our primary consideration now having to be her treatment and well-being. Attempting to move both ourselves and the business at this point would be just too much for either of us to manage.
Hope this message didn't turn out to be too depressing as I didn't intend it to be, but I thought you'd want to know
Best regards, Bob
From: Bob Date: Mon, 30 Sep 2002 To: Family & Friends Subject: Bettye's Recuperation and Prognosis
To our friends and family:
Thank you all for your kind thoughts and prayers for Bettye over what have been a very difficult couple of months. Her recuperation here at home began on September 11th and continues with her regaining more of her health and strength with each passing day. She is still in significant pain, but the debilitating effects of her successful lung cancer surgery seem to lessen daily. As a confirmed non-smoker, she was of course devastated by the diagnosis but determined to defeat her cancer, which she seems to have accomplished handily. She's been doing breathing exercises every hour or so for the past month in an attempt to get the remaining lobe of her left lung to expand and fully replace the top lobe, which was removed during the surgery.
She has been able to get out for limited excursions most mornings for the past week or two to our favorite spot on the beach for coffee and muffins, and is looking forward to getting back to The Zoo Health Club for a resumption (albeit slow) of her regular daily workout routines. An hour or two of activity outside the condo is about all she can manage at this point without tiring and being forced to rest up before undertaking anything further. We have been to a couple of movies and out to a few restaurants, but must necessarily avoid crowds, so early-birds and matinees have been the limit so far. Our main concern is keeping her away from any kind of coughs, colds or respiratory bugs until her lungs have healed completely; a bronchial or pulmonary infection is the last thing she needs at this point.
Bettye has asked me to thank each of you for your kind messages, cards, calls, flowers and visits. We know that everyone's prayers and good wishes went a long way toward ensuring her good health and a successful recovery. The news from her surgeon that radiation and chemotherapy would not be needed was a wonderful thing to hear. He will, of course, be sending her to an oncologist for followup and further evaluation and we have confidence the news at that time will be just as good as the post-surgical pathology indicated.
For those who did not receive my first message of September 7th on this matter, I have attached a copy below. We are confident that her preemptive strike with the diagnostic CT Scans we had at FAU back on July 10th have, just as her doctor said: "saved her own life", and that she will achieve a full and complete recovery over the course of the next few months.
Again, we urge anyone who has the slightest doubt about their own good health or the thoroughness of their most recent annual physical exam, to seek out and secure a diagnostic CT Scan of their own. Bettye's perseverance in this regard certainly saved her life, and it can do the same for others - we advise you to go for it. We're more than glad that we did.
From: Bob Date: Sat, 07 Sep 2002 To: Friends & Family Subject: Bettye's Surgery and Result
To our friends and family:
If you are aware of what has been going on with Bettye over the past couple of months, please bear with me while I explain the full situation to those who are not.
Bettye had been having some trouble over the past year or so with a persistent cough and unexplained itching in her chest, along with a certain uneasiness about the state of her health. She had never been treated for any of these admittedly generalized symptoms other than with Claritin for suspected allergies or anti-histamines for her respiratory complaints. Even though she works out regularly at The Zoo Gym (two hours a day, four days a week, with other workouts at the condo on her off days) she has felt the need for a complete medical checkup. She booked us both into the FAU (Florida Atlantic University) MRI diagnostics lab on July 10th for full-body CT scans.
The doctor at FAU pointed out a couple of problems for us both, but the one he was most concerned with was a "hyper-metabolic" tumor in her upper left lung. He provided us each with a three page written report and CD/Roms of the scan results, then called in followup the next day to be certain she had contacted her primary care physician. Bettye advised that she had called but had not yet heard back, at which point Dr Stone said if she didn't hear back from him that afternoon that he would call personally the next day. Bettye took it seriously but the doctor from FAU was adamant about the urgency for followup, which she pursued relentlessly, and which her primary care physician acted on immediately and with appropriate concern. He referred her to all the necessary specialists and followed closely to ensure things moved along quickly.
We were able to get all the tests run over the course of the next couple of weeks (PET scan, CAT scan, brain scan, bone scan, blood work, respiratory function, ad nauseum) but then the oncology surgeon seemed to be dragging his feet about scheduling the surgery. We went for a final consultation with him on Thursday, August 29th, which began and ended with acrimony in that he was unwilling to address her questions or concerns and seemed to take the overall position that he knew what was best and the procedure didn't require an explanation to us. Anyone who knows Bettye knows that at this point she moved on to Plan B.
We finally enlisted a new surgeon that same afternoon. Bettye, of course, had all of her reports and copies of the various films and CD/Roms from the diagnostic workups; delivered them to his office on that Friday; and set an initial consultation for Tuesday, September 3rd. He was not only very forthcoming with his diagnosis but also welcomed each of our questions regarding the procedure and his prognosis for her future. He was one of the few physicians we had spoken with over the course of this situation who told her "Good for you" when advised that she had taken the initiative to secure the CT Scans no one else was willing to order up.
The surgeon, Stuart L Boe MD at North Ridge Medical Center, is the same surgeon Bettye's brother Everett had for his bypass surgery about a dozen years ago and Bettye had a feeling of complete confidence in him. His manner on Tuesday convinced her to switch surgeons and hospitals on the spot and Dr Boe indicated he had already made a tentative scheduling for her surgery two days later (the 5th) provided she was ready to proceed. Needless to say, she and I were ecstatic at the prospect of finally getting her to surgery for what we knew to be a serious, life-threatening problem. Skipping out of the office that day may have seemed inappropriate to an outsider but it certainly expressed our relief at finally getting off the dime with the surgical schedule.
The initial procedure was done at noon on Thursday, beginning with a technique known as VAT (video assisted thoracotomy) and the tumor and several nearby lymph nodes were excised and sent for immediate biopsy. The tumor proved to be every bit the hyper-metabolic, intense cancer the tests had anticipated, although still in what is apparently known as stage one. The good news was that the lymph nodes were clear of any involvement. Dr Boe then proceeded to enlarge the small 6cm incision he had used to access the tumor with the laparascope to about 9cm (approximately 3.5") through which opening he removed the upper left lobe of her lung.
She has spent the past two days in ICU at North Ridge, and Dr Boe brought her more good news yesterday that the tissue pathology had come back negative for cancer cells anywhere but within the tumor itself. His opinion is that everything came out with the tumor and upper lobe, and that no chemotherapy or radiation would be required at this time. He explained that he was able to get the lobe out through such a small incision mostly because Bettye was in such excellent physical condition and was so flexible that he didn't even have to break a rib to accomplish the removal.
We expect her to have a full recovery and Dr Boe indicated his prognosis was that her chances for a recurrence of the cancer were minimal at best, but that she would of course be monitored regularly. The most encouraging thing he offered us was when he came into the recovery room Thursday night and told Bettye: "Congratulations, you saved your own life."
Her insistence on having the CT scans done had indeed saved her life as waiting for more serious manifestations to arise and trigger a medical response could have allowed the tumor to grow over a rather short period of time and become metastatic and inoperable.
It is for this reason that we have encouraged anyone else, particularly those of you in our age group, to seek out and secure a preventative full-body diagnostic CT Scan as a way of catching what may be life threatening problems before they advance too far. My own scan revealed the kidney stones I knew I had, but also showed one of the stones to be blocking the ureter (drain) from my left kidney and threatening the loss of that kidney if left untreated. My own urologist was unaware of the blockage, but my new one solved the problem forthwith using what seemed like an ultrasound jackhammer. When your doctor's hands are tied by the intransigence of your insurance provider, you have no choice but to take the initiative on your own. It is, after all, your health being dealt with.
In any event, these CT Scans were, for us, the best couple of thousand dollars we have ever spent - even if Blue Cross does refuse to pay for them. The best result, of course, is having the scan; finding nothing wrong; and securing peace-of-mind in the knowledge that you really are in good health.
We thank you all for your good wishes and prayers.
We're confident they went a long way toward ensuring success in Bettye's battle with cancer.
With best regards, Bob
Scans show lung cancer early
Regular CT scans are an effective screening tool for lung cancer that can save lives by getting treatment started early, a study says.
November 30, 2004 BY MELANIE COFFEE Associated Press © 2004
CHICAGO - Using computerized scans to screen for lung cancer can help save lives and should be part of a regular checkup for people who have a high risk for the disease, a new study says. Ninety-six percent of the patients in the study who were diagnosed with lung cancer through CT scans and had the cancer removed found that the disease did not return, said the study's lead investigator, Claudia Henschke, a radiology professor and head of chest imaging at New York-Presbyterian Hospital / Weill Cornell Medical Center.
The earlier that lung cancer is found, the better the patients' chances of survival. Henschke presented the findings Monday in Chicago. Lung cancer causes most cancer deaths, killing more people than breast, prostate and colon cancers combined, according to the American Cancer Society. The disease often is diagnosed at advanced stages, when it is incurable, and has an average five-year survival rate of only 15 percent.
CT, or computed tomography, scans allow doctors to find cancer in earlier stages. The technology involves scanners that view the lungs and surrounding tissue at different angles and can spot growths that are as small as a grain of rice. The tests cost hundreds of dollars, are usually not covered by insurance and can lead to more diagnostic procedures.
The study, called the International Early Lung Cancer Action project, reviewed about 27,000 cases of people who were at a high risk for lung cancer. More than 400 were diagnosed with cancer, mostly in the early stages. The project began in 1993 and followed patients for an average of four years, Henschke said.
Some doctors worry that CT scans find growths that are not problematic, and can cause patients to needlessly have tumors removed. The study outlined recommendations for doctors to follow to help ensure that such procedures are not performed on patients who do not have the disease, Henschke said. The key to keeping survival rates high in lung cancer screening is for patients to receive CT scans regularly, Henschke said.
© 2004 The Miami Herald 11/30/04