My Latest Homework Assignment

Every June for the last 20 years Beth Israel Hospital has hosted a symposium called A Celebration of Life.  It describes itself as “a full day of celebration, education and community, which raises awareness about the battle against cancer.”  Everybody who has been a cancer patient at Beth Israel is invited.  It is also described as “an opportunity to share your personal stories.”  To that end they invite you to contribute to a Book of Writings.  My favorite infusion nurse, Mary Jo, gave me a copy of the Book of Writings for 2012.  I read it cover-to-cover, and I frequently found myself in tears.  I said to myself that I should contribute something.  And then I never did.  Suddenly last weekend, I was moved to put digital pen to paper.  I submitted what I wrote on Monday, 4/15, only to discover that contributions were due 3/31.  After some uncertainty, I was told on Wednesday that they will be able to include my piece in the book.  The Celebration of Life closes each year with a Panel of Survivors.  The organizers asked me to participate, as a relatively new survivor.  They will also seek out survivors from 20 years ago.  I am most honored, and I will probably speak of my gratitude toward the medical staff who pulled me through.  So it was turned in late, and it may have been chewed by the dog, but here it is:

The unexpected benefits of having cancer

Cancer cures you of any sense of invincibility.  You, who may have been an aggressive athlete, who may have been a competent professional, who may have been a leader in your church or town, are suddenly unable to do much more than get to the bathroom and keep yourself clean.  You who excelled at gathering and retaining information, are suddenly barely able to read more than a page or two, and then often with next to no comprehension.  You, who always cared for and provided for others, are now one that others have to take care of.  Yes, you never tried to lord it over others, and yes, you tried to act like an ordinary person, but suddenly you realize that your self image was based on the ability to get things done, to provide, to care for others.  Without that capability, who are you?  What do you bring to the table?  Forget about invincibility.  Your essence now has to embrace vulnerability.  You have to accept that you are a mere mortal.  You were all along, but cancer has a way of hitting you upside the head with that fact.

Cancer opens you up to emotional expression.  When you are lying there 9 days after your stem cell transplant, when you have no immune system and your body is attacked by a raging infection, your gratitude that the medical staff have the tools and the insight to pull you through, leaves you in tears as you try to thank them.  You are unable to say thank you to your favorite nurses without springing massive eye leaks.  You have found out what it means to “walk through the valley of the shadow of death”.  When you tell your family what that felt like, you are overwhelmed by the wonder of having survived the ordeal.  Maybe you thought you had an appreciation for the value of life.  Now you know how truly glorious life is.  Nothing like almost losing something to awaken you to its value.

Cancer makes you acutely aware of all those people who really want to help you.  Sure you had teammates, co-workers, social acquaintances, and members of the various communities you belonged to.  But you only ever expected family to rally round when the going got tough.  But all those different people helped out driving, making meals, doing the chores you used to do, caring for the dogs, …  All those different people responded to the LotsaHelpingHands appeals.  You may have thought you were a lone ranger, but in fact, you were a mouseketeer.  All those other mouseketeers are right there to help you and to plug the gaps your disability has created.  They say it takes a village.  And that is not just to raise a child.  It is to respond to one laid low.  Another nuance to add to your conception of yourself.  Someone who has lots of friends willing and able to help out in a pinch.  You never knew!

Cancer makes you appreciate the caring professions: doctors, nurses, people who scrub the floor.  The list starts with the doctors, but the ones who really matter are the nurses.  They are there to help.  That’s their job!  And they do it so well.  The little tricks they have from seeing how others cope, such as the lotion that relieves that annoying rash.  Or the cream that makes bi-hourly diarrhea bearable.  Or the hot blanket that brings you back from the bone-crushing shivers.  And unlike the doctors, whose first names you only see on medical bills, you only know the nurses by their first names.  Is this an attempt at anonymity?  Or is it a shield so that you can’t act on your crushes in the outside world?  Whatever, the nurses are your connection to humanity that pulls you through, that gets you through the valley.

Cancer makes you appreciate medicine, both the science and the practice.  You are exposed to the practitioners who decide what you have and how to treat it.  They carefully feed you enough information so that you can understand and cooperate in the treatment.  They assess your physical symptoms throughout your treatment, and react to how the disease is responding to their treatments.  But you realize that there are many aspects of the medical profession that you never see, but which you totally rely upon.  Pathologists read your specimens and determine if the key markers are going in the right direction.  Research scientists perform the basic research that leads to advances in treatment regimes. Clinical doctors perform the studies and clinical trials that demonstrate the effectiveness of new treatments.  Engineers and technicians create the machines that see into your body, measure the key characteristics of your blood in 45 minutes, give you color images of your heart and lungs in motion, and separate the elements in your blood so that stem cells can be isolated.  You owe your continued life to both the science and practice of medicine.

Cancer lets you know how much it helps to express yourself in writing.  As many others who have written for the Book of Writings, the written word helps you form vague feelings into crystalized emotions.  You have never been through such an experience, and you want to share that experience with others.  Writing helps you share, and in doing so, helps your own realization of what you have been through.  It may still amaze you that people care to read your drivel.

You may have cancer, but there is always someone who has a worse case than you do.  As you get up off your hospital bed and begin walking slowly around the ward, you see others at different stages of their treatment, with other types of cancer, and different intensities of cancer.  You may have been feeling sorry for yourself, but there are others far worse off than you.  You may get there eventually if your disease reoccurs, but for now you are in comparative easy street.  So cancer has a way of making you thankful, even in the face of adversity.

Nobody chooses cancer.  Everybody fights cancer as hard as they can.  But you learn something from cancer, and it reveals a good deal about your life that you may have been unaware of.  Let’s hope that those revelations are ones you can live with.

Meanwhile, wonderful things have been happening on the MMRF Race for Research front.  The team Greg’s Legs is now up to 6 participants, and my wife has yet to join.  The team has raised a total of $3,255!  About three times what I ever expected or hoped for.  I would like to say a heartfelt “Thank You!!!” to everyone who has contributed.  And point out to those who have not done so yet that it is easy: simply go to http://support.themmrf.org/goto/GregsLegs.  On the right hand side of the page is an orange button to click to Donate.  If you care to run or walk 5K on next Saturday, click on the Join My Team button just above that.  But enough badgering.  I am incredibly grateful to everyone who has supported these efforts.  Maybe when my MM comes back, there will be new tools in the arsenal to combat it.

Good Tests, Minimal Treatment

We met Wednesday with three different doctors that comprise Barbie’s treatment team at Mass General Hospital.  “We” consisted of Barbie & her support group: me, our daughter-in-law Bridget Quinn (a doctor herself, so she could understand the medical lingo), and Nina Huber, a member of the chorus who underwent breast cancer treatments at MGH herself 7 years ago.  The treatment team consists of Dr. Taghian, a radiation oncologist, Dr Gadd, the surgeon who performed the lumpectomy, and Dr Shin, a medical oncologist. 

The base information that they were dealing with was very good.  The lump was 1.6 centimeters long, 1.5 wide, and 1 thick.  So it was smaller than an inch in its longest dimension, which means it was caught quite early.  It tests positive for hormone receptors (ER+ and PR+), so it will respond well to aromatase drugs that suppress estrogen production.  It tests negative for HER2, which is a good thing in that HER2 positive tumors are more aggressive.  The result of an oncotype test was 7.  Anything less than 18 is considered low.  So low, in fact, that chemotherapy is not recommended.  Anything over 30 (the test can go as high as 100) has a high risk that the cancer will reoccur, and chemotherapy is recommended.  18-30 is intermediate, and chemotherapy may or may not be worth the risk of the side effects, depending on other characteristics of the individual tumor.  The risk of recurrence with an oncotype test of 7 is 8% per decade.  The only disappointment was that the tumor was described as a grade 2 tumor.  That is on a scale of 1 to 3, where 1 is slow-growing, 2 is intermediate, and 3 is fast growing.  But everything else was a good as possible, given one has a cancer.

The first doctor we saw was Dr Alphonse Taghian, the radiation oncologist.  The purpose of radiation is to reduce the likelihood of recurrence.  With no radiation the recurrence rate is 15 – 40%.  Radiation reduces that to 2%.  He outlined 4 possible courses of treatment.  The traditional treatment is 6 weeks of radiation, 5 days per week.  The first 5 weeks target the entire breast, and the last week targets the location of the tumor.  The second treatment is a Canadian variation on the first, which consists of 4 weeks of radiation, 3 treating the entire breast, and the last week targeting the tumor location.  The third course is called Partial Breast Irradiation (PBI) which consists of intense radiation of just the area where the tumor was removed.  This is done in two treatments per day for one week.  The fourth course is very similar to #3: radiation targeted toward the location of the tumor, but  just once per day for 2 weeks.  All treatments appear to have the same results.  They don’t do treatments 3 & 4 for many types of breast cancer, and the amount of data documenting the results varies.  They have 25 years of data for treatment 1; 12-15 years for treatment 2; 9-10 years for treatment 3; and treatment 4 has been in a clinical trial for just 1 year.  Treatments 1 + 2 are available in many locations, including Emerson Hospital, which is much more convenient to Stow than MGH.  Treatments 3 + 4 are only given at MGH.  Dr Taghian did not recommend any one treatment, saying Barbie should sleep on the decision.

The second doctor we saw was Dr. Gadd, the surgeon who performed the surgery.  She gave Barbie a copy of the pathology report that she had discussed over the phone.  She inspected the incisions, and was impressed that Barbie has healed well.  Maybe conducting is therapeutic.  Dr Gadd will see Barbie again in a year.  She emphasized that the results were all good, and Barbie has a very treatable form of breast cancer.

The third doctor we saw was Dr. Jennifer Shin, the medical oncologist.  She was very concerned about Barbie’s emotional reaction to what has happened to her and the news she was getting.  While the surgeon and the radiation oncologist worry about cancer in the breast, her concern is about the overall outcome and the possibility that this cancer can spread to other parts of the body.  Because of the low oncotype result, chemotherapy is not recommended.  But hormone therapy is recommended, and Dr Shin prescribed an aromatase drug that she should start taking after the radiation treatment is complete.  Barbie will take this drug for 5 years, and the anticipated effect is to halve the rate of recurrence.  So instead of an anticipated recurrence rate of 8% per decade, it becomes 4%, which is not significantly different from the rate of new cancers for post-menopausal women.  The effect of the hormone therapy is to eliminate estrogen, which causes tumor cells to grow faster.  Unfortunately, it also results in a reduction in bone density, so Barbie will get a bone density scan as a baseline before she begins the treatment, and she may have to take something like Fosamax to counteract that effect.  Another piece of good news: the copay for the drug prescribed is $19.33 per month.  A far cry from the cost of Multiple Myeloma drugs!

While waiting for between doctor sessions, Barbie and her team came to a decision regarding which radiation treatment to choose.  Barbie opted for choice 3, the one-week PBI treatment in at MGH.  It will get the treatments over quickly, and let her start the hormone therapy sooner.  Scheduling is underway; Dr Taghian said the first available time would be the second week in May.

Net: This was a small, relatively benign tumor that was caught early.  The lumpectomy was successful, and the lymph nodes show no sign of it spreading.  It is PR+ and ER+, so it will respond well to hormone therapy.  It is HER negative, which means it is less aggressive.  The oncotype of 7 means chemotherapy is not recommended.  The course of treatment will be 1 week of targeted radiation in May and 5 years of estrogen suppression. 

Emotionally, it was a great relief to get all this information and have a definite treatment plan.  The doctors are all top notch, and the treatments should not be overly intrusive.  Naturally it would have been nicer if Barbie did not have had any cancer, but if one is forced to become acquainted with this disease, this was a good type to have.

On the Multiple Myeloma front, the race to benefit the MMRF (Multiple Myeloma Research Foundation) is coming up soon on April 27^th.  We now have a team of 6 (assuming Barbie can now sign up), and the fund raising is going well.  You can still join the team if you would like to run or walk a 5K course at Carson Beach in South Boston.  If you are unable to do that, you can participate financially by donating at http://www.themmrf.org/teamraiser/races/1590.html.  MMRF earns awards for having a high (>90%) portion of the funds raised go to actual research.  The efforts they fund will make it so that when my MM comes back, I have a greater chance of surviving.  Recently I read a blog by Lon Nessler, a Yale graduate who died last November of Multiple Myeloma.  See http://nesseler-medical.blogspot.com/.  He describes MM as a rare, incurable, universally-fatal blood cancer.  The goal of the MMRF is to remove the words incurable and universally-fatal.  Obviously their efforts were not in time for Lon Nessler, but who knows, they may be in time for me.  That’s why I’m running the race.  Please join my team in whatever way you can.

Meanwhile, we continue to get great joy from our sons and their growing families, and hope to be able to spend more time with these ever-so-cute little ones.  Here are Brian + Brendan, Andrew + Emma.  Both little ones clearly taking nourishment.