cure
Denton, Texas in January 2009
November 18, 2014
An EEG test last week revealed no evidence of seizures. So I'll be avoiding doctors for a while!
Happy Thanksgiving!
October 26, 2014
I recently received an excellent report after a follow-up MRI. Here's to good health for all!
Lyon, France in September, 2014
May 19, 2014
Today, I am celebrating three weeks post brain surgery. I could not be more pleased with the outcome and look forward to a 100% recovery within the next couple of weeks. By then, the lingering effects of the steroids should be gone and I'll be sleeping normally. Last week, I was able to attend an opera and two of Leonard's concerts in Detroit. So life is good and I look forward to a visit from my parents and sister in mid June.
No news will be good news and I may not post here for a long time. Please know that the support of everyone who has followed this blog has contributed enormously to my recovery, a three year process with a very positive result thanks to family, friends, and physicians! I could not be more grateful.
May 6, 2014
I've discovered the power of corticosteroids - a necessary medication given brain surgery, but one with huge side effects. I've not slept well for ten days, and I'm very anxious and crabby. Thankfully, my patient husband has taken all of this in stride, and even found a bit of humor in my frustration while I was on speaker phone for hours with our internet "service" provider. He wrote the following for the Huffington Post.
The Wait is Not Over
[ read more ]
May 1, 2014
Happy May Day!
Leonard just snapped the picture below three days post brain surgery. I can feel, think, talk, and walk normally, a major miracle thanks to Dr. Mark Rosenblum and his marvelous team at Henry Ford Hospital in Detroit. It's hard to believe the tumor was removed through my left center forehead. Aside from a little swelling and a slightly black eye, you'd never know it. The doctor also carefully left enough hair for me to (mostly) cover the staples that run from ear to ear across the top of my head. Those will come out in a couple of weeks and the hair will of course grow back.
Thanks to all for your love and support. It has meant the world to me.
April 29, 2014
Greetings from the Ford Hospital in Detroit. It's been 24 hours since I went under the knife, and I am feeling just fine. However, I could use a good neck and shoulder massage! I'm on an anti-inflammatory drug which helps with brain and face swelling, and I’ve moved off of the serious pain meds to Tylenol.
The doctors came by this morning to say how pleased they are with the outcome of my surgery. They are 95% sure the tumor will not recur, their highest rating.
They accomplished a lot in three and a half hours. Please skip this paragraph if you are not comfortable with surgical details. The ping-pong ball size tumor was located just behind my forehead on the left side. To prevent visible scarring, they made an incision just behind the hairline, pulled down the skin, removed a large piece of bone (about 3 inches in diameter), took out the tumor (it had also attached to the bone) using microscopes, reconstructed the brain lining using tissue from on top of the skull, put the skull piece back, secured it with glue, and stapled the scalp back into place.
The docs discovered that the tumor was located very close to a blood vessel that feeds the language center of the brain, thus the symptoms I described in my entry below. Working in that particular area required very delicate maneuvers, so the docs were absolutely elated that I was able to carry on normal conversation once awake.
I am wearing a tight, turbine-type bandage to help control the swelling, and I’ve walked around the ICU a couple of times as well as up and down some stairs. I’m in a unit with mostly stroke patients in grave danger, so I’m one of the lucky ones.
The plan at the moment is for me to move to a private room on another floor and go home at about noon on Wednesday if the swelling is under control.
My Leonard was with me throughout the day yesterday and will return soon to keep me entertained. He is the reason I recover well - life with him is too fun to be missed!
P.S. A special thanks to our good friends in St. Louis for making it possible for Leonard to return to Detroit early on Sunday, safely, and in style!
March 13, 2014
Florida was “just what the doctor ordered” as you will read below, and the Detroit Symphony Orchestra's many successes while on tour there recently will keep a smile on my face for a very long time. I so enjoyed being a part of it.
What follows is actually good news, all things considered.
My doctors have discovered a totally non-life threatening, completely benign tumor just under my left front skull, unrelated to breast cancer. There’s nothing that points to a cause except bad luck, or “spontaneous mutation” as the doctor put it. The technical name for the tumor is “meningioma” and mine is in a particularly “good” place, far away from the most critical areas of the brain. Its removal will not cause any cognitive or motor dysfunction because no part of it is touching brain matter or important blood vessels. But that could change if I don’t have it removed, and the pressure exerted by its relatively large size (about an inch in diameter) could cause more severe symptoms if I wait too long.
Presently, my symptoms are mild and infrequent, and they will disappear once the tumor is removed. About once per day, words I intend to say are hijacked away from me and replaced by related words. I say “hijacked” because I have absolutely no control over my speech when this happens. It feels very weird, and I knew something was amiss after the second or third occurrence.
So I called our internist, and he arranged for a CT scan and an appointment with a neurosurgeon. The neurosurgeon told me I was in no immediate danger and gave me permission to go to France and Florida. During that time, I sought a second opinion with the kind assistance of a physician Leonard and I know through the DSO, and I’ve decided to have treatment under the care of Dr. Mark L. Rosenblum, Chairman of the Department of Neurosurgery at Henry Ford Hospital and highly regarded by many of our friends in Detroit.
One can read about him here.
We discussed all the options for tumor removal including various forms of radiation, but both he and my first doctor believe that conventional surgery is the best course of action. That will require a partial head shave (glad I didn’t throw away my wig and hats) and removal of a piece of skull which will be put back and secured with a special glue instead of a metal plate. After the hair grows back, there will be no visible signs of surgery, and I should be able to do anything I want six weeks later. I will be in the hospital for approximately three days and able to putter about the house as soon as I arrive home. We have scheduled surgery for Monday, April 28 - moved up a week from May 5 - so the weather should be perfect for the daily recommended walks.
Leonard has already begun the process of re-arranging his schedule so he can be with me in Detroit the day of surgery and during the subsequent six weeks. This required a cancelation, but he would have it no other way despite my protestations. He’s the best, and by my side now as ever.
Our restful vacation in Bora Bora just after the new year was divine as this picture attests.
November 14, 2013
Since my last posting in May, our travels have taken us to Lyon several times, Ft. Worth, my home town of Eatonville, Santa Barbara, Las Vegas, Aspen, Rancho Santa Fe, two locations in Hawaii, Gstaad, London, and La Caruña. When anyone asks where I live, I always say “out of two suitcases.” Thankfully, my recuperation progressed well enough to allow all this travel, and now, for the first time in more than two years, I feel physically able to do most everything I could before the first surgery in June of 2011. What remains is some additional rehabilitation to my right shoulder, arm, and hand. Piano-playing and using a pencil are still difficult, but much improved after several months of class IV laser therapy. “Cheers” to whomever is reading this!
May 17, 2013
On the eve of the Komen Race for the Cure here in Detroit - blessings to all who support cancer research - I write from our Michigan home, resting comfortably after my 5th surgery in two years.
This was a four-hour procedure requiring just one night in the hospital, a so called revision surgery using fat harvested (as they say) by liposuction to fill in numerous indentations and create a little better symmetry. There was plenty of fat to work with in my waist and buns, the result of having spent so much time in Lyon, France! The doctor also improved upon some scar tissue. I’m sore, but prescription Advil keeps the discomfort under control.
Multiple surgeries and radiation have caused some adhesions in my chest area, but there is some possibility that daily massage will remedy the problem. If not, I will undergo one more procedure in the fall to replace the damaged dermis.
So there have been some difficult days, but also many filled with joy. Last week, Leonard conducted the Detroit Symphony Orchestra on tour in two extraordinary concerts at Carnegie Hall. We had one day all to ourselves and he surprised me with tickets to Nora Ephron’s extraordinary last play, Lucky Guy. Back stage with Tom Hanks and Peter Scolari was great fun.
I feel compelled to comment on Angelina Jolie's recent decision to make public her prophylactic double mastectomy. She potentially saved her own life as well as the lives of countless others who will now more fully explore the many available breast cancer treatment options. How wonderful that she used her celebrity to raise awareness.
To have heard her say that she feels no less feminine and is blessed by the loving support of her partner echoes my own experience. Just a little less than two years ago, Leonard asked me to marry him, three days prior to my own double mastectomy. What a gift that was and is.
February 22, 2013
Two days ago, I began my 6th decade. Can't say I feel a day over 60! The drains were removed yesterday and I had a haircut today, my first outing since surgery two weeks ago. The severity of my tummy tuck makes standing up for long periods difficult, but I've made pretty good progress on that front already:) My doc said I'm out of the woods now and on the way toward a full recovery, as long as I exercise patience. That's the hard part. Tomorrow I'll hear my first concert in a long while, Beethoven's 9th with the DSO and Leonard conducting. That will give me a boost. It always does.
February 16, 2013
I’ve been at home for a few days now. I am happy with the outcome of my surgery: the radiation-damaged skin has been replaced, the transplanted tissues are warm and therefore alive, the muscles in my chest are strong, and the artificial (potentially problem-causing) implant has been removed.
All of the drugs are likely responsible for flu-like symptoms that started on Wednesday and continue in moderation to the present: I threw up a couple of times, experienced chills, and dealt with huge constipation followed by diarrhea. Our housekeeper was able to spend several hours with me each day while Leonard was away, so I’ve been alone very little. Today, I’m stronger and have spent quite a bit of time at the computer – along with everyone else – doing tax preparation. Argh.
With any luck, I can have the two remaining drains from my abdomen removed early next week. But all of this was put into its proper perspective when just a few minutes ago . . .
We received a call from a friend who is fighting ovarian cancer while continuing to work tirelessly on behalf of her clients. And to make matters worse, she recently learned of a brain tumor that will require radiation. I’ve known of no one more brave, more giving, more tenacious or intelligent. She is a true warrior, an incredibly wonderful human being, and my inspiration. Go Denise!
February 11, 2013
The docs are pleased with how my surgery turned out. The procedure took over 11 hours with one doctor working on my stomach and the other reconstructing my breasts. It was necessary to remove a little muscle from my abdominal area in order to create an adequate blood supply for the radiation-damaged right breast. Day one post surgery was probably the most difficult because my throat was quite sore. By the end of day two, the nurses had me sitting up in a chair. And today I will do a little walking once my new room is ready. I’ve been in ICU thus far, sharing a nurse with just one other patient. Leonard brought me some movies to watch, so I will enjoy those. It’s still difficult to talk on the phone or visit with people. The plan is for me to go home on Wednesday. What’s most challenging is standing up straight as my tummy is extremely tight. It will take some time to stretch the skin.
During my surgery, one of Leonard’s Beethoven concerts with the Detroit Symphony Orchestra was streamed live into the operating room. Thank you, DSO, for bringing the healing power of music to me and my doctors.
February 7, 2013
Here’s wishing all of you much happiness in 2013. I anticipate a good year as well - my 60th. The first edits for a new CD of my orchestral music just arrived - due for release in about six months. That will be something I’ll celebrate. Speaking of celebrating . . . last month, Leonard played my Double Play with the St. Louis Symphony at Powell Hall, a particularly meaningful experience since it was on that stage we first met in 1987. Accompanied by many St. Louis friends, we indeed celebrated the beginning of our relationship as well as Leonard’s return to his former orchestra. Then we flew to France for two wonderful weeks in Lyon, Paris, and Nantes.
Now it’s back to work . . . more surgery on February 8, described in the entry for November below. I visited with the surgeon today and he said I can “look forward” to two days in ICU and another 3 days in the hospital with possible release on Wednesday, February 13. During my days in ICU, I will not be allowed even to sit up because the tissues might be overly stressed by gravity and movement. I hope to catch up on my sleep.
I discovered an added benefit to the upcoming surgery . . . restoration of the muscles in my chest to their natural place against the chest wall. Although I knew my implants were to be placed under the chest muscles, I wasn’t told that it would feel very strange every time I flexed those muscles, as if they were distant and disconnected, which they are. The mechanics have felt all wrong and shivering is especially uncomfortable. But not for long. The implant on the left and expander on the right will be removed, and new fat and skin will replace the damaged, thin skin. I’m actually looking forward to this surgery and getting rid of all the artificial parts. The implant itches deep down and the expander causes considerable pain when I reach too far. Curing cancer was the easy part. Recovering from the cure has turned out to be more difficult. But I’m not complaining, just stating the facts as I understand them in case they may be useful to someone reading this.
November 19, 2012
Last week, I saw my reconstructive surgeon, Dr. Eti Gursell, who removed my stitches and said my healing process was going well. But he also said that the radiated skin on the right side had been damaged too much and would not withstand expansion. So he recommend I see Dr. Kongkrit Chaiyasate who specializes in reconstructive microsurgery. Dr. Chaiyasate concluded that I would be a good candidate for a procedure called DIEP flap, in which blood vessels called deep inferior epigastric perforators (DIEP) and the skin and fat connected to them are removed from the lower abdomen and transferred to the chest without sacrificing any of the abdominal muscles. So I will get a free tummy tuck! Now I know why the docs have encouraged me not to lose weight. The good news is that I will not be losing muscle from either my back (the first option discussed) or my stomach. Also, this procedure will produce a permanent result using my tissue only with no artificial materials involved to possibly cause problems later. I'll likely, therefore, have both breasts re-reconstructed in this way, probably at the beginning of February. This will be a serious operation with the possibility of several days in ICU, but this young doctor has done more than 100 of these operations with no failures. And given the promise of no complications later in life, this seems like a reasonable decision.
In October, while in Lyon, longtime friend Sue came to visit. We had a great time. Leonard and I then spent a week in beautiful Prague where he conducted the Czech Philharmonic. Now we are back in Lyon where we will celebrate our first anniversary tomorrow at Paul Bocuse's main restaurant near Lyon, l'Auberge du Pont de Collonges. Yum!
October 14, 2012
October 9th was a big day - my nephew's birthday - but also the day my oncologist told me that a recent follow up CT scan provides proof that spots on my lung and liver are not cancerous. They are likely just irregularities resulting from infections or drugs. That was great news.
Last week, Leonard and the Pittsburgh Symphony shared Heinz Hall with President Clinton and Robert Morris University, sponsor of the Pittsburgh Speakers Series. We were given access to the backstage area for a brief chat with the President before his lecture about the Clinton Foundation. To quote from the website: Building on a lifetime of public service, President Bill Clinton established the William J. Clinton Foundation with the mission to improve global health, strengthen economies, promote healthier childhoods, and protect the environment by fostering partnerships among governments, businesses, nongovernmental organizations, and private citizens — leveraging their expertise, resources, and passions — to turn good intentions into measurable results.
September 24, 2012
I’m not sure who told me I would need to be a patient patient – that the healing process would likely take about two years. It looks like that’s going to be the case. I saw a member of my surgical team today and she explained that my current situation is not unusual – that surgeries involving irradiated tissue often fail. She also told me some things that make it clear I should revise my recommendations in the third paragraph of the September 13th entry below: Waiting longer and then expanding would likely not have worked because the irradiated tissue was too compromised and not elastic enough. As it was, the surgeon first tried a simple “exchange” procedure (expanders for silicone) – of course hoping for the best. But now, it’s clear I may need a more elaborate surgery that will involve taking a flap of skin and muscle from my back. Decisions about this will be made in the coming weeks and months.
In the meantime, I am gaining strength after the last surgery and feeling less discomfort with each passing day. As the doctor explained, the tissues remain swollen for quite a few weeks.
If I had known how complicated, time-consuming, and sometimes painful the reconstruction process might be, not to mention that I would loose muscle function and strength through the chest and right arm, would I have elected to start the reconstruction process in the first place? Probably yes. The prospect of getting back some of what would be lost made facing the mastectomy a lot easier. The wild card was the radiation. There was no predicting the extent to which it would affect reconstruction, and one always hopes to be among the 60% who achieve success without complication. Also, in the beginning, there was so much to do, and all of us were more focused on the important thing - eradicating the cancer. I likely could not have summoned up the additional energy required to make even more decisions about reconstruction.
Given positive lab results and low risk of infection, I decided to go ahead and accompany Leonard to Japan just four days after my September 7th surgery. Leonard, bless his heart, did all the heavy lifting, and I was able to enjoy the trip very much.
September 13, 2012
So much for making pronouncements. Alas, the saga continues. Just after returning from a wonderful two weeks in France with Leonard, I reached for the soap in the shower - not a particularly aggressive move - and all the stitches in my right breast "unzipped" resulting in an alarming four-inch opening, which fortunately did not bleed too much. Luckily, it was a weekday and Leonard was able to get my surgeon on the phone within five minutes. We covered the wound with gauze, rushed to the hospital, and I was under the knife within a few hours. I am so very grateful to everyone for getting me the help I needed quickly, and also extremely thankful this mishap did not occur on the plane!
The silicon implant was removed and replaced by an expander, so essentially I'm starting over on the right breast, the one where cancer was discovered. As my surgeon explained, six weeks of radiation caused the skin to thin and the muscles to atrophy, and complications of this sort are not particularly unusual. It's a setback because there will be months of healing and expansion to go through, followed by yet one more surgery. I've been more uncomfortable post-surgery this time than after previous surgeries, but the good news is that the follow-up lab work showed no signs of infection.
What have I learned from this that I can pass along to those who might find themselves in a similar situation? Expand the cancer side very slowly after a long period of healing to a size slightly larger than desired so that after implant surgery, the skin will not be too tight. Then be sure to tape the wound for additional reinforcement and be especially careful lifting and stretching. My implants were done five months post radiation. That may not have been enough time. In retrospect, it might have been a better idea to continue gentle expansion for a few more months to create more skin and more space.
August 4, 2012
I am officially ending posts to this blog, and after a 16-month adventure/fight/journey, I am happy to report a very positive outcome. My final reconstructive surgery was completed successfully on Monday, my original “profile” has been restored albeit with some scars to remind me not to take life for granted, and a recent physical exam by my oncologist shows no signs of recurrence.
What will I do with my extra time now that all those doctor and clinic visits are behind me? Some of it will be devoted to the cancer cause. I haven’t yet decided just exactly what I will do. Where is the need the greatest? I can’t be sure, but my first response is to say I don’t think there is enough awareness. Especially problematic is the very real possibility that mammography has been oversold. We have a long way to go – 40,000 American women die of breast cancer each year.
So please read about early detection. But . . .
Be careful about reading health books. You may die of a misprint. –– Mark Twain
My family gave Leonard and me a belated wedding reception in my home town last month. It was great fun.
June 6, 2012
The last two months have flown by, or perhaps it's that Leonard and I have done the flying: to Florida for a performance of my Double Play with the New World Symphony, to Detroit for performances of my Symphony with the DSO - all, of course, conducted by my Lenny - to Geneva to Lyon to Detroit. There were also visits from friends and relatives along the way: my mother and sister, friend Pamela, and brother and sister-in-law Fred and Virginia.
On the health front, I struggled with the side effects of taking Arimidex (arthritic-like bone and joint paint) so my oncologist recommended a one-month hiatus to see if things would improve. They did a little, so he decided I should switch to another similar drug, Aromasin. For edema I was prescribed a water pill, and for a pinched nerve in my wrist, a cortisone shot following weeks of physical therapy, a splint and drugs that ultimately didn't help much. It appears that 26 years of mousing around at the computer has taken its toll.
The picture of me sporting my new hairdo was taken by Pamela during our tour of Detroit. The consensus seems to be that I should keep the hair - short, curly, and silver. It's pretty liberating, actually.
April 4, 2012
It's been a year since my internist asked for mammograms from previous exams. I had been down that road before and was confident the findings would be the same: "spots" that showed no change. And besides, there was no history of breast cancer in my family. Well, I changed that!
The history of my year fighting cancer includes every emotion from sheer terror to profound love. There was discomfort, inconvenience and loss. But there was also huge support and encouragement from those close by and others far away. That meant everything to me and made all the difficult moments go by much more quickly. I feel so fortunate not to have been alone during this time. In fact, I was blessed with the absolute opposite - Leonard practically didn't let me out of his sight.
So, it's time to celebrate and count my many blessings. We are off to Florida soon, and I look forward to sand and sun.
March 3, 2012
Sixth months of treatments (chemo and radiation) are now behind me and I can look forward to healing completely from the effects of both. The last week of radiation was a bit rough, as about a square foot of skin under my right arm and across my chest began to peel, burn, and itch to the point where sleeping became difficult. I also experienced also some sharp stabbing pains from time to time.
But these discomforts were made much more tolerable by the news that my recent CT scan (seven months after the first one) showed no cancer. Now, despite some lingering fatigue, I am ready to escape all of the docs for a couple of weeks with Leonard in France and Germany!
February 11, 2012
It's a quiet, snowy morning in Detroit, and I'm taking a moment to reflect upon all of the activities in recent days–rehearsals, pre-concert talks, a webcast and two concerts (with one more tonight) by the Detroit Symphony Orchestra. Included on the program are Shostakovich's Violin Concerto No. 1 with Julian Rachlin as soloist, the Symphonic Dances of Rachmaninoff, and my Einstein's Dream for computer generated sounds, strings and percussion. People often ask me: "What's it like to sit in the audience and hear your own music played?" For this set of performances in particular, the word "family" first comes to mind. Music unites, especially in the case of an ensemble like the orchestra, where a very large number of people gather together to play as one family. During the rehearsal process, the players embraced my music, and they embraced me through it. That warmth was conveyed to the audience as well, and I felt the exhilaration of having communicated meaningfully via the orchestra and its conductor (my hubby) to an extended family of very attentive listeners. It's been a very good week.
In fact, it's been a very good month. Leonard returned from a successful three weeks of concerts in Japan and Korea, and I completed about two-thirds of my radiation treatments with only a mild "sunburn" to show for it. I also started physical therapy to help stretch and strengthen the muscles in my right arm and shoulder affected by surgery, and I began seeing an occupational therapist to address the mild lymphedema in my right arm. I've put many miles on my car this month with all of the running around, but I feel very fortunate to have had such relatively easy access to so many healthcare providers. I can't even begin to imagine how people in small towns cope with this disease.
January 14, 2012
I began radiation treatments two days ago at the Lawrence and Idell Weisberg Cancer Treatment Center in Farmington Hills. It's only twenty minutes from home in a nice neighborhood with delis and shopping close by. Parking is easy and the staff friendly. I will have a total of 33 sessions, five days per week through February 27. The treatments don't take long - about 10 minutes. My sports car is ready for the winter driving with its new set of wheels and snow tires. OK, I'm trying not to give up everything about my Texas past!
Leonard's son Daniel flew in for the weekend and we went to the Detroit Auto Show's Charity Preview along with about 12,000 other people. It was great fun. The retro Fiat made everyone smile.
December 22, 2011
Surprise ending! Yesterday, my oncologist decided to stop my chemo, which means I didn't have a 6th infusion on the 21st as scheduled. The rash and swelling I've experienced following the last three infusions are cause for concern, allergic reactions - signs the body has had enough. As my doctor put it "You probably didn't need chemo anyway. It was an insurance policy. My threshold for stopping is quite low given tests that showed your recurrence rate is very unlikely. You will be on Arimidex for five years and that's the drug which prevents recurrence more than any other. I'm afraid one more chemo infusion may cause a much more serious reaction. We've been lucky so far and our luck may run out. Often I prescribe only four infusions and you've had five. You're going to be fine. Go home and celebrate."
So, Leonard baked me a cake and we did, indeed, celebrate.
Radiation will start just after the 1st of the year. Until then, I'm off the hook which gives us time for a short honeymoon.
Here's wishing all of you wonderful Holidays and the best 2012 ever!
December 4, 2011
Three days following chemo #4, I flew to Pittsburgh to be with Leonard and to hear him conduct two performances of my Double Play with the Pittsburgh Symphony Orchestra. They played beautifully and we had a very good time visiting with the soloists and other members of the orchestra. The next stop was Washington D.C. for a week of rehearsals and concerts with the National Symphony Orchestra. We also enjoyed dinners with several of Leonard’s longtime friends and a reception the musicians gave Leonard following his last concert.
Once home in Detroit, I developed rather severe edema, apparently an allergic reaction to the extra dexamethasone (a steroid drug) I took following chemo #4. My arms, hands, feet, and legs swelled up to the point where I could not wear shoes comfortably or easily write with a pen. My nose also ran constantly.
Luckily, there were other things to think about – most importantly our wedding. On November 20th Leonard and I were married in our home with about twenty relatives and friends attending. It was special beyond words – an extraordinarily rich and wonderful experience full of joy and love. I am so very happy.
I was scheduled to have chemo #5 three days later, but the doctors told me the swelling was too great and that I would have to wait another week. The good news . . . I was therefore able to enjoy Leonard’s Thanksgiving cooking.
The 36 hours following chemo #5 on November 30th were pretty rough. I was not given the extra dexamethasone because of my previous reaction, but the rash I had previously experienced was quite a bit worse. I was awake most of the night fighting pins and needles with Benadryl. Next time, I’ll ask for more intravenous Benadryl to see if that might help. The swelling in my right arm remains a problem, but should be helped by the compression glove and sleeve that will be ready for pickup tomorrow.
November 5, 2011
The experience of each chemo infusion has been slightly different. Intravenous Benadyrl was added to my chemo #4 cocktail on November 1, and it prevented all of the fever and most of the rash from recurring. I was given Dexamethasone to take for two additional days. Side effects from the Benadryl included some pretty severe restless leg syndrome, so I slept very little the first night. I experienced no nausea during the first two days, but woke up on the third day feeling slight nausea and huge fatigue. Nonetheless, I managed to finish packing for a flight to Pittsburgh to be with Leonard. He played my Double Play with the Pittsburgh Symphony and it went very well.
My focus now will be on our wedding set for November 20 in Detroit. I could not be happier!
October 15, 2011
Following chemo #3 on October 12th, I experienced nausea, chills, and fever once again, this time accompanied by a full body rash. I called my oncologist and he recommended Benedryl which helped enormously to relieve both the rash and fever. By October 14, I was feeling much better.
It was a joy to hear the Detroit Symphony Orchestra on stage at Orchestra Hall once again, and also great fun to follow the Tigers in the playoffs. Most of my time, however, was spent coordinating the move to our new house and managing the crews hired to do upgrades, maintenance, and cleaning. It's a beautiful, contemporary home in a secluded, wooded area of Bloomfield Hills, a suburb north of Detroit about 30 minutes from Orchestra Hall. We decorated the living room in fall colors inspired by the view.
September 25, 2011
Chemo #2 on September 23rd dealt an unexpected blow with significant nausea, chills, and fever. I was in bed most of the day yesterday and thankfully able to sleep most of the time. Today I feel quite a bit better, probably the result of Leonard's homemade chicken soup!
We closed on a beautiful house on September 22nd, so there will be much to do in the days ahead as we prepare for the move. I have many people lined up to help, so I'm not too worried about becoming overly tired. Leonard opens his season in Detroit this week too, so it's a busy time.
September 21, 2011
Eleven wonderful days in France went very quickly and now we’re back in Detroit. Leonard opened his season with the Orchestre National de Lyon in a series of four concerts, all received with huge enthusiasm. He also received a very warm welcome from the mayor of Lyon, the American consul, and many others who pledged their support in the coming years. Equally meaningful was the presence of staff and friends of the Detroit Symphony Orchestra who joined us in Lyon for two concerts, tours of the city, and many delicious meals. We also participated in a cooking class with the Detroit group.
Leonard worked extraordinarily hard in his multiple roles as music director, ambassador, and administrator, and I could not have been more proud of him.
I felt just fine throughout the entire trip. The doctors predicted I wouldn’t leave the hotel room because of the expected fatigue from chemo. But thankfully, I was blessed with abundant energy and missed nothing during the entire eleven days. Here’s hoping I can report the same following chemo infusion #2 on September 23rd.
September 11, 2011
As we remember September 2001 and the sadness of that day, we can turn to the healing power of music. On September 5, 2011, Leonard conducted the BBC Symphony Orchestra in an extraordinarily moving performance of Barber’s Adagio for Strings. A video recording is available here on YouTube.
http://www.youtube.com/watch?v=wjvVqtffz7I
A number of months ago, Leonard received a heartwarming response . . .
Mr. Slatkin,
I'm glad I decided to write this instead of speaking with you. It just wouldn't sound right for a grown man to croak out his gratitude. I am writing in regards to your performance with the B.B.C. Philharmonic on September 15th, 2001.
Being a retired teamster, I just took it for granted that you were British. Culture, per se is not usually associated with my socio-economic group or even my friends for that matter. I did not get to see your magnificent performance of Samuel Barber's Adagio for Strings. You see, at that time I had become an emotionally void being. I had ceased to function as a father, friend, husband, human and on and on. It was not until maybe a year later I had the privilege of watching you work. I have to tell you, the raw emotion of that music was like a punch in my face. A much needed one. As I felt the music pour through my previously empty soul, I was overcome with tears as you worked with a dignity that made me think, "This guy is doing a great impression of an American under extreme duress."
When I became strong again, I sought out your performance for my Facebook page. A slight chore for a semi-literate computer operator. But well worth it. The bottom line Mr. Slatkin, is that to a great extent, you restored my humanity. You also made me proud to be American. This is what I drew from YOUR strength and dignity. On a day that probably was the worst ever for you.
Thank you for everything.
Sincerely,
Mike
September 10, 2011
I am happily now in France with Leonard, having arrived yesterday without delays. After a nice long sleep, we spent the day wandering around Lyon in beautiful sunny weather. There were a couple of surprises. The first was a "symphony" of motorcycles numbering more than 1000 gathered in one of the city's main squares. Leonard thought the cacophony needed a little conducting.
The second surprise came a few minutes later when we spotted 6 or 7 bicycles pulling around posters advertising Leonard's season-opening concerts next week.
The third surprise was handed to us my the hotel concierge: a copy of the weekend supplement from the local paper, Le Progres, featuring articles about Leonard and the Orchestre National de Lyon. Click on the front page below for the full article.
Today is day 10 post chemo and I continue to feel strong with no fatigue, a big surprise given what the doctor's predicted.
I did have one pretty serious setback, however, that threatened to cancel my trip. The severe constipation I wrote about on September 6 resulted in a few wounds to the inside of my colon and some pretty significant pain for three days. Chemotherapy slows down the regeneration of cells in the lining of the digestive tract, causing it to become very susceptible to injury. The anti-nausea meds I took during the few days following chemotherapy caused the constipation, and I wasn't told that I needed to take double my anti-constipation meds to combat it. My wonderful internist, Dr. Mark Joliat, came to my rescue with a prescription of Prednisone, 40 mg per day, which brought immediate relief. He promises I won't be taking it for more than a few more days.
September 6, 2011
Today is day 6 post chemo and I feel strong with no fatigue. By day 4, I felt little or no nausea and was able to stop taking the anti-nausea medications. Next time, I'll know how to better deal with the side effects of these - severe, and I mean severe, constipation! Perhaps that's too much information for you, but I'm trying to write honestly and completely about this process. I'm also finding some benefits of having no hair: it takes me just 15 minutes to get ready in the morning, and now I can wear hats comfortably. No hat hair!
September 1, 2011
Today is Leonard's birthday and he is celebrating with friends in Lyon right now. I miss him terribly but hope to see him in about a week. The docs say it's OK to travel if I feel well enough. At the moment, I have every reason to be optimistic about that as I seem to have sailed through my first chemo without too much trouble. I had two mild bouts of nausea, one at 1:00 AM and the other at 5:00 AM this morning, but I was able to keep the discomfort under control with my meds, crackers and ginger ale. I'll probably crash tonight, but so far I've been up and about doing my normal routine, and I even went out to get my wig and a bunch of hats. The Demi Moore look isn't so bad, however!
So once again, I have been reminded that confronting the way things are is much easier than dealing with the unknown. I wasn't looking forward to this day, wondering how sick I might be, not knowing what it would be like to lose the hair, but happily, I feel pretty good and hope to be even better tomorrow. There will be some fatigue, they tell me, but even that may go relatively unnoticed if I get my sleep, eat right, and exercise. I'm trying.
I would like to send all of my support and love to a dear friend's daughter, Lisa, who is struggling with brain cancer after nearly two years of fighting breast cancer. She has been and continues to be my inspiration. Hang in there dear.
August 31, 2011
Greetings from the Karmanos Cancer Center. I'm sitting comfortably in a lounge chair getting my first infusion, computer in my lap, pretty much doing business as usual. I'm trying to visualize "life-sustaining nutrients" coursing through my veins instead of Taxotere and Cytoxan. It's not easy!
The docs think the drugs they've given me will control the nausea. So far so good. I've been at the hospital since early morning: first the blood test, then a wait for the analysis and report on the blood, next a visit with the oncologist, followed by a wait for the cocktail to be mixed, then three hours for the infusion. There are some people in this room twenty years younger with children at home. We've just got to find a cure for this!
Leonard's very capable assistant, Alice Sauro, will drive me home in a couple of hours. She made me chicken soup, so I'm happy. I also thawed out some of Leonard's delicious gazpacho and was pleasantly surprised to find out that it freezes just fine. It's so refreshing.
So I've completed one more step along the road. The doctors and nurses have been terrific and so have all of you. Thank you for your support!
August 27, 2011
Where did August go? I hope all of my Texas friends managed to escape the heat for awhile.
The docs gave me most of the month off so I could do some traveling with Leonard. First, we visited friends "up north" in beautiful Charlevoix, MI. Then we spent a few days in Santa Barbara where Leonard conducted a concert at the Music Academy of the West. My Circuits was on the program along with the Rite of Spring and Tchaikovsky's Francesa, all expertly performed by the Academy's students. We had a very good time visiting with friends too.
Leonard's son Daniel flew in from Florida to spend the next couple of weeks with us. It was great having the extended time with him. The next stop was Aspen where I promptly developed a serious toothache, but antibiotics eventually helped. I kept myself busy editing some of my old music while Leonard rehearsed. We spent evenings with friends at their homes or one of the many excellent restaurants in town, often followed by star gazing! The concert at week's end featured Russian pianist, Olga Kern, who brought the "tent" down. What a talent!
We left Aspen by private plane with friends for a short 24 hours of rest and relaxation in gorgeous Rancho Santa Fe near San Diego. Leonard and Daniel played golf while I enjoyed our hosts' beautiful pool and garden. The next day, we went to Los Angeles for concerts at the Hollywood Bowl with the LA Phil. My mother and sister flew in from Seattle and attended the first concert along with her two first cousins and spouses. It was so very good to see all of them. Everyone had a great time catching up and listening to Leonard's program of Liszt and Ravel.
The next day, I flew back to Detroit for a minor surgical procedure; a metal port was placed under the skin in my shoulder to make future injections and blood draws easier. It left me with a couple more scars, but I'm used to them now! A plastic surgeon gave me a tip: it's not so much the fish oil or the vitamin E that helps make scars disappear, it's the massage during application. So gently rub those scars away!
After a second concert at the Bowl, again with Olga, Leonard flew to France to begin his season with the Orchestre National de Lyon. I have plans to join him there for his opening concerts in mid-September.
My first chemo is on August 31 and Leonard's assistant will be with me all day. I've learned that the fear of the unknown is always worse than dealing with events themselves, so I'm sure the chemo experience will be less difficult than what I've imagined.
In the meantime, we have a big project in the works, actually a welcome distraction from all the doctoring: we're trying to buy a house in Bloomfield Hills. It's been a lot of work so far, but the good news is that we've discovered the best real estate agent in the world, I'm sure of it. Her name in Nanci Rands and she is a real pro, not to mention a lovely person.
Do I have cancer now? Will it return? A dear friend sent me this excerpt about how to live meaningfully with questions. I'm sure you will like it too. Thanks to all who have written recently. I'll respond soon. All the best. Cindy
I would like to beg you dear Sir, as well as I can, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.
Rainer Maria Rilke
Letters to a Young Poet
August 3, 2011
One week ago, Leonard joined me for a lengthy and very informative meeting with my oncologist, Dr. Michael Simon. The good news: my cancer is not serious enough to “require” chemotherapy, although given findings during surgery, it has been reclassified and is now considered Stage IIb T-2, N-1, M-0. That means the tumor size was 2.5 centimeters, there was one positive node, and the cancer had not metastasized. The less good news: there isn’t enough data to suggest that chemo won’t help.
The final decision about chemotherapy was therefore postponed until August 1 at which time Dr. Simon presented my case before the Karmanos tumor board consisting of no fewer than 3 oncologists, 2 surgeons, and 1 radiation oncologist. The outcome: the board has recommended a regimen of six cycles (1 injection every 3 weeks) of docetaxel and cyclophosphamide. My cocktail does not include those drugs considered most damaging to the heart. For that, I am grateful. Dr. Simon feels comfortable letting me wait one month before starting chemo on Wednesday, August 31. This gives me the opportunity to travel with Leonard for a couple of weeks and also makes additional trips possible during the upcoming months if side effects are moderate. Once chemo is completed, there will be a period of rest followed by 5-6 weeks of radiation.
In the meantime, I am taking Anastrozole (Arimidex) which is in a class of medications called aromatase inhibitors. These drugs work by decreasing the amount of estrogen the body produces, slowing or stopping the growth of many types of breast cancer cells that feed on estrogen. Once chemo starts, I will stop taking Arimidex and go back to it for 5 years when chemo is completed.
So now I have a plan, and the wig has even been ordered! We bought it at a little store in Detroit called Susan’s Special Needs, owned and operated by an oncology nurse who is herself a breast cancer survivor. It is indeed a special place and the people there kind, knowledgeable and skilled. No, I didn’t choose platinum blond . . . although I thought about it for a few seconds.
What a long haul all this is! But the alternative is unacceptable and I have a wonderfully supportive fiancé (he calls me his finance because I’m the one who watches over our accounts) who hasn’t wavered a bit and who, most importantly, makes me laugh every day. He told me a silly joke this afternoon: How do you fix a broken sousaphone? With a tuba glue.
If you’d like to read Leonard’s very personal and very touching response to this journey, please click here.
July 22, 2011
Yesterday I met with radiologist, Jennifer Webb, at the Karmanos Cancer Center, and learned that my case is in the category "radiation highly recommended." I was disappointed to hear this, but not surprised given the bits and pieces of information I pieced together from recent conversations with the doctors. This will require short sessions at the hospital, five days per week for five or six weeks. This process will start after whatever chemo may be required. On August 1, the tumor board will meet to decide what to do about that. My Oncotype DX test score was extremely low - 4 out of 100. Any score below 18 indicates a low recurrence rate. But the one positive lymph node causes concern about the possibility of a cell or two having escaped to another part of the body. So I'm quite sure there will be chemo therapy of some kind. With any luck, it won't be too harsh.
The good news - I can likely start all treatments after August 24, so I'll be able to travel with Leonard for a couple of weeks between now and then. I'll hear him perform my Circuits in Santa Barbara, we will spend a few days in Aspen, and I'll see my mother, sister, and cousins in LA.
Later today, I will be at the hospital doing a routine CAT and bone scan. Then I'll spend a relaxed weekend with Leonard and his son who arrives later today for a visit. It will be very good to see him.
July 15, 2011
I have had to learn a lot about patience in the last couple of months - to be patient with myself, for one thing. Healing now takes much more time than it once did. And I've also learned that cancer treatment is extraordinarily complex, requiring the involvement of dozens of medical professionals from many disciplines. Coordinating schedules is difficult and waiting is often required.
So I know less today about my future treatment than I thought I would. Whether or not to administer chemo and/or radiation in my case is a question not easily answered, and it will require about two more weeks of tests and analysis. This is good news in that it means there is a chance I won't need chemo and radiation. But until I know for sure, I can't easily schedule trips with Leonard. That's the hard part for travelers like us. But I gather chemo can be administered most anywhere.
On August 1, my case will be presented before the Karmanos tumor board and a solution will be proposed shortly thereafter. I feel good about the fact that many doctors from many disciplines will participate in this session, so I'll benefit from multiple opinions.
The remaining drains were removed yesterday and today I am feeling quite good, with only minor discomfort in my arms. In fact, my surgeon gave me the OK to drive. I'll give myself a few more days, though, since my manual transmission sports car is not exactly a walk in the park to operate or ride in. Anyway, I kind of enjoy relying on chauffer, Leonad and his Ford Taurus SHO. It's a great car by the way.
July 12, 2011
What a difference a day makes. My lead surgeon just called to say that the preliminary pathology report shows no cancer beyond the small amount found in one of two sentinel nodes. This is very good news.
A sentinel lymph node is the first lymph node or group of nodes reached by cancer cells from a tumor. My three tumors were "guarded" by two sentinels.
Earlier in this blog, I reported that two lymph nodes were removed during surgery. I found out today that the surgeon actually said two "sentinel" lymph nodes were removed. One of the two was discovered to have contained a small amount of cancer, which then required the removal of about nine more axillary (under the arm) nodes associated with that sentinel. These are the nine nodes which tested negative today.
It was disappointing to learn that additional lymph nodes were removed, as that can lead to complications including swelling of the arm (lymphedema), but we are at the same time celebrating the much more important news that there is a high probability the cancer has been surgically eradicated. Follow-up care will increase that probability. I will know more on Thursday.
July 11, 2011
This morning, we saw my plastic surgeon for the first of several post-op visits. He removed one of four drains I carry around with me in my "Marsupial Pouch," something nurse Sherry suggested I order off the internet. It's a handy terry cloth belt with two pockets. After a two-hour nap to get rested up after the early appointment, Leonard and I went out together for the first time since surgery to the home of friends in Grosse Pointe. He barbecued burgers prepared at home the day before using ground sirloin, crushed saltines, raw egg, and Sweet Baby Ray's Barbecue Sauce. Yum!
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July 8, 2011
I am now resting comfortably at home. Leonard is doing the cooking (as he always does) and nurse Sherry is making sure I follow the doctor's orders. I can walk around the apartment and do most things for myself except lifting more than five pounds and reaching overhead. The pain is under control too, so I feel quite good on this beautiful, sunny day in Michigan.
July 7, 2011
Surgery went well yesterday and I'm feeling quite strong already. It was about a 5-hour procedure. A small amount of cancer was found in one lymph node, so it was taken out along with a second one as a precautionary measure. The surgeon believes she removed all of the cancer in the breast area. We won't know about follow up care (radiation and chemo therapy) until the pathology report is available in about a week.
The Karmanos Cancer Center staff has provided excellent care, and nurse Lenny has been at my bedside from the beginning. His smile and good humor have kept my spirits high.
Thank you for your thoughtful messages. I look forward to returning home at about noon tomorrow.
July 3, 2011
Dear Family and Friends,
This has been the best day of my life! Leonard returned safely from South America, broke open a magnificent bottle of Chateauneuf du Pape, cooked a delicious Dijon mustard chicken dinner and asked me to marry him!@#$%^&*()!!!!!!!!!!!!!!!!:):):):):):):):):):):):):) We haven't decided when yet, but likely toward the end of the year. I could not be happier!
So now, surgery on Wednesday seems like nothing more than a bump in the road, and I feel even more determined to get well soon.
Leonard and I will do our best to post a message here as soon as we can following surgery on the 6th. Thank you for your support and please enjoy your 4th of July.
June 25, 2011
Friends here in Detroit have been especially helpful in recommending where to go and whom to call for assistance. Today, I had a very inspirational and comforting conversation with a registered nurse (Sherry) who will spend a couple of days with us at home immediately following my release from the hospital. Now here's the best part . . . she is a cancer survivor. Two years ago at the age of 59, she had the same surgery I will have including reconstruction, and she also went through radiation and chemotherapy without missing a single day of work. I look forward to meeting her!
June 17, 2011
I've seen all of my doctors now, and I feel very good about each of them: surgical oncologist Dr. Min Hui Elizabeth (Liz) Kim; reconstructive surgeon and Chief of Plastic Surgery at Harper University Hospital, Dr. Eti Gursel; and oncologist/internist, Dr. Michael Simon. Each doctor has expressed confidence in our ability to win this battle. Everyone at the Karmanos Cancer Center has provided excellent care . . . with an emphasis on the word "care." I could not be more pleased about that. A special thanks also goes to Karmanos Cancer Institute Board Chairman, Alan S. Schwartz, for helping to facilitate my care.
A bilateral mastectomy followed by reconstruction is scheduled for 7:30 am on July 6 and I am expected to be released the following day. In the meantime, Leonard will take the Rotterdam Philharmonic on tour to South American while I rest, exercise, go to a pre-op class, visit with my doctors as necessary, and finish up some composition projects. This will be an especially emotional trip for Leonard as it was during a Rotterdam Philharmonic concert that he had his heart attack almost two years ago. Within twenty minutes, he was on the operating table. The Dutch saved his life.
A few days before my surgery, Leonard will return home so he can rest too in preparation for his new job. Nurse Slatkin has a nice ring to it, don't you think? Karmanos will also provide daily in-home visits by an RN, so I will be in good hands all around.
What my schedule will be like post-surgery is anybody's guess. If lymph node involvement is obvious during surgery or discovered subsequently by the pathologist, then I will likely have five months of chemo and six weeks of radiation after I've healed from the surgery. However, if I'm lucky, the lymph nodes will test negative for cancer and I'll be able to resume most activities within a few weeks.
The support of my family and friends will get me through regardless, not to mention the realization that at this time, there are over 2.5 million breast cancer survivors in the United States!
I have very much enjoyed hearing from you and look forward to staying in touch.
June 11, 2011
On this 11th day of the month, I thought I would pass along something interesting.
There are four unusual dates in 2011: 1/1/11, 1/11/11, 11/1/11, 11/11/11.
If you add the last two digits of the year in which you were born to the the age you are or will be this year, the result is 111 for everyone.
June 10, 2011
Thank you everyone for your generous and kind messages. Your support means the world to me. Surgery has been pushed back a day and is now confirmed for July 6 to give the docs a much needed 4th of July holiday.
June 9, 2011
Dear Family and Friends,
I have bad news, good news, and more good news. The bad news - I've been diagnosed with breast cancer. The good news - we think it's stage 1 (we will know more about that after surgery) and we know it's slow-growing. And more good news - I have Leonard. Somebody once told me he's at his best under pressure. Now I have proof.
We have sought and received two opinions from two groups of doctors and have decided to pursue care at one of the leading cancer centers in the country, the Karmanos Cancer Institute in Detroit. There are still some tests and consultations to do before surgery which we have tentatively scheduled for July 5th.
I have had yearly mammograms since I was in my late 30s, but this particular cancer did not show up on my recent scan. It was discovered only after one of my doctors felt a suspicious "thickening" and decided to order a sonogram. Needless to say, he, my internist, and everyone involved in the initial discovery are on my list of angels.
Although the ductal tumors are relatively small, they are scattered throughout the right breast - thus the need for at least one mastectomy, probable radiation and chemotherapy. The decision to do reconstruction immediately or later is complicated by the likelihood of radiation, so I don't know about that yet.
This will be a long haul and will require the majority of my time and energy in the coming months. That’s why I’ve decided to post updates here periodically for those who wish to check back. I’ll respond to messages as best I can, but if the responses are late or short, I know you will understand.
I would also like you to know that I have full confidence in my doctors. Through Leonard and our Detroit Symphony Orchestra friends, I was introduced to the chairman of the board at the Karmanos Cancer Institute. He contacted the chief medical officer there who called me twice and set up appointments with a team of doctors and staff who have been wonderfully responsive and kind. I even had multiple phone and email communications with my lead surgeon before my first visit with her yesterday. How often does that happen!
So, I’m off to the races. I have the stamina and the will to beat this thing and the necessary support from everyone. Feel free to share this URL with our close friends.
Love,
Cindy