My Journal

June 1999

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Tuesday, 1 June 1999

Lately, I've been thinking a lot about the story Flowers for Algernon by Daniel Keyes. It's a short story that was turned into a novel and eventually made it into the theaters as a movie back in 1960 or so. Charley. Cliff Robertson won an academy award for his portrayal of Charley. It's a classic and one that is still taught in high schools today.

Anyway, the story is about a mentally retarded man who undergoes a medical experiment that makes him smart. Very smart. He's a guinea pig for medical science. But the change is not permanent.

I've been thinking about this story because I've been feeling a lot like a Charley since my UAE. As I meet more and more women who've undergone UAE, I've come to know some that have had little to no fibroid shrinkage, some that had to go on to hysterectomy due to infections, and yet others who are still contending with a variety of side effects. Some of us who undergo UAE exist in a roller coaster life that goes up and down with no real certainly where it all will land. I wonder if I will end up like Charley -- back at the beginning from where this all started. And, am I better off for having at least tried this route -- or not? I think so; but, I'm not really sure.

I also can't help but wonder about even the women who seem to have really good outcomes from this procedure. Do we really know what any of it will mean to us 5, 10 or 15 years from now?

I read an article on how hysterectomy patients, by and large, initially feel great post procedure because they've finally taken some action to cure their ills. Then, 5-7 years later they undergo a delayed processing impact on their bodies. Hormonal whammies from another planet. Depression that smacks them from out of the blue. A whole slew of physical ailments that don't get under control until they thoroughly figure out how to deal with their specific hormonal imbalances. IF, that is, they learn how to deal with their specific hormonal imbalances. This reminded me of Charley as well.

I first read Flowers for Algernon in 6th grade and saw the movie Charley when it first appeared on television. It fascinated me. I hadn't really thought much of it since then until now.

Actually, it's been on my mind for quite some time. Maybe keeping this journal is contributing to my memories of the story.

Charley kept a journal.

I don't know. I just don't know. But I've been thinking about it a lot lately.

Sunday, 6 June 1999

Went to the company picnic today with my family. This was the first picnic they've held since I was hired on February 1 and therefore the first one for us to attend with this new company. I can't remember the last time I had so much fun at a company sponsored event. I spent a fair amount of time in the adult-sized version of a Jolly Jumper. But, I was in good company as the President of the company specifically requested this size of jumper so that he too could bounce away with his kids! It was an exhausting riot of good fun.

Probably the only down side to the jolly jumper was the fact that, after several hours (off and on) of playing in this oversized jumping cage, my uterus and its lovely monster size fibroids began creating a few problems with undue pressure on the bladder.

Wednesday, 9 June 1999

I'm having a difficult time concentrating these days and staying interested in my job from one day to the next. Seems like my brain would rather be off doing something entirely else and just doesn't want to be here. I actually have to force myself to stay on track and stay focused.

Saturday, 12 June 1999

Received mail from my mother today. She sent me a photograph of one my dad's younger brothers who recently died of cirrhosis of the liver. He was not much older than me. Forty-seven. Only five years difference in our ages. But an entire world apart in how we each handled the crisis that come and go in life. I always liked my uncle a lot. He was a sweet and gentle man. Quiet. Sorry that he died so young.

My mother included a poem in the mail she sent me. Someone had sent it to her via email and she printed it out for me. She could have just forwarded it to me -- but, I'm not sure she knows how to do that with email yet. Anyway, the poem touches me and makes me reflect on so much. I agree with everything in it. The closing statement says to "send this to all the people you have faith in" but there is no author listed. This is my mom's way. To tell me what she feels through other's words. Here's what she sent:

I've learned . . .

that you cannot make someone love you.
All you can do is be someone who can be loved.
The rest is up to them.

I've learned . . .

that no matter how much I care,
some people just don't care back.

I've learned . . .

that it takes years to build up trust,
and only seconds to destroy it.

I've learned . . .

that it's not what you have in your life
but who you have in your life that counts.

I've learned . . .

that you can get by on charm for about fifteen minutes.
After that, you'd better know something.

I've learned . . .

that you shouldn't compare
yourself to the best others can do.

I've learned . . .

that you can do something in an instant
that will give you heartache for life.

I've learned . . .

that it's taking me a long time
to become the person I want to be.

I've learned . . .

that you should always leave loved ones with loving words.
It may be the last time you see them.

I've learned . . .

that you can keep going
long after you can't.

I've learned . . .

that we are responsible for what we do,
no matter how we feel.

I've learned . . .

that either you control your attitude
or it controls you.

I've learned . . .

that regardless of how hot and steamy a relationship is at first,
the passion fades and there had better be something else to take its place.

I've learned . . .

that heroes are the people who do what has to be done,
when it needs to be done,
regardless of the consequences.

I've learned . . .

that money is a lousy way of keeping score.

I've learned . . .

that my best friend and I can do anything
or nothing and have the best time.

I've learned . . .

that sometimes the people you expect to kick you when you're down
will be the ones to help you get back up.

I've learned . . .

that sometimes when I'm angry I have the right to be angry,
but that doesn't give me the right to be cruel.

I've learned . . .

that true friendship continues to grow,
even over the longest distance.

Same goes for true love.

I've learned . . .

that just because someone doesn't love you the way you want them to
doesn't mean they don't love you with all they have.

I've learned . . .

that maturity has more to do with what types of experiences you've had
and what you've learned from them
and less to do with how many birthdays you've celebrated.

I've learned . . .

that you should never tell a child their dreams are unlikely or outlandish.
Few things are more humiliating,
and what a tragedy it would be if they believed it.

I've learned . . .

that your family won't always be there for you.
It may seem funny, but people you aren't related to can take care of you and love you and teach you to trust people again.
Families aren't biological.

I've learned . . .

that no matter how good a friend is, they're going to hurt you every once in a while
and you must forgive them for that.

I've learned . . .

that it isn't always enough to be forgiven by others.
Sometimes you have to learn to forgive yourself.

I've learned . . .

that no matter how bad your heart is broken
the world doesn't stop for your grief.

I've learned . . .

that our background and circumstances may have influenced who we are,
but we are responsible for who we become.

I've learned . . .

that just because two people argue,
it doesn't mean they don't love each other.

And just because they don't argue,
it doesn't mean they do.

I've learned . . .

that we don't have to change our friends
if we understand that friends change.

I've learned . . .

that you shouldn't be so eager to find out a secret.
It could change your life forever.

I've learned . . .

that two people can look at the exact same thing
and see something totally different.

I've learned . . .

that no matter how you try to protect your children,
they will eventually get hurt
and you will hurt in the process.

I've learned . . .

that even when you think you have no more to give,
when a friend cries out to you,
you will find the strength to help.

I've learned . . .

that credentials on the wall
do not make you a decent human being.

I've learned . . .

that the people you care about most in life
are taken from you too soon.

I've learned . . .

that it's hard to determine where to draw the line between being nice,
and not hurting people's feelings and standing up for what you believe.

Thursday, 17 June 1999

On Thursday, June 17, I had the opportunity to participate in a Uterine Artery Embolization Research Conference held at Rand Corporation in Santa Monica, California. The following was provided to participants as a project summary.

"Uterine artery embolization (UAE) is an emerging non-surgical technology for reducing symptoms from uterine fibroids. It has been proposed as a less invasive alternative to current treatment for these common, benign uterine tumors. In the U.S., gynecologists perform between 150,000 and 300,000 hysterectomies and more than 35,000 myomectomies each year to relieve symptoms of uterine fibroids. Thus, if research demonstrates its safety and efficacy, UAE has the potential to benefit hundreds of thousand of patients each year. Despite this large potential benefit, the current body of research on UAE is quite limited, with fewer than 500 procedures reported, and no trial prospectively comparing UAE to more conventional procedures. For this reason, the Society for Cardiovascular and Interventional Radiology (SCVIR) and RAND Health have agreed to work together, convening this expert panel meeting in order to set an agenda for research in this area."

Researchers and statisticians employed by RAND pulled together a review of UAE medical literature, contacted authors of key papers, and evaluated journal articles and abstracts to pull together a review of UAE research. In addition, research on hysterectomy and myomectomy was reviewed and provided to participants. Comparative tables containing information on all three treatment options were put together and copies of supporting medical literature were provided to participants. We were given 3-5 days to review all of the material.

The overall objective of the conference was to spend the day reviewing what is known (and, by default, what is not known) about each of the three procedures. In addition, we were to discuss potential research studies which could be designed to increase and improve the amount of information available on UAE.

Participants consisted of a team of individuals considered the "Expert Panel" members who would, by and large, lead the discussion throughout the day but also included a number of researchers, statisticians, and organizational representatives from RAND Health and the SCVIR.

Expert Panel Members

Susan Ascher, MD, Associate Professor of Radiology and Director of Body MR, Georgetown University Medical Center & Medical Advisor, Office of Women's Health, U.S. Department of Health and Human Services

Alan DeCherney, MD, Chair of Obstetrics and Gynecology, UCLA School of Medicine

Carla Dionne, Patient Advocate, Author and Technical Writer, www.uterinefibroids.com

Carole Flamm, MD MPH, Senior Consultant, Technology Evaluation Center, Blue Cross and Blue Shield Association

Scott Goodwin, MD, SCVIR UFE Task Force Chair & Associate Professor of Clinical Radiology, UCLA School of Medicine

Bruce J. Hillman, MD, ACR Board of Chancellors, Chairman, Department of Radiology

Peter Juhn, MD, Executive Director, Care Management Institute, Kaiser-Permanente

W. Gordon Peacock, MD, Chair, American College of Obstetrics and Gynecology (ACOG) District IX

Jim Spies, MD, SCVIR UFE Task Force Research Work Group Chair & Vice Chairman, Department of Radiology, Georgetown University Medical Center

Neil Wenger, MD, MPH, Chairman, UCLA Medical Center Ethics Committee & Associate Professor, Department of General Internal Medicine and Health Services Research, UCLA School of Medicine

Additional Participants

Robert Brook, MD, Sc.D., Vice President and Director RAND Health

Michael Broder, MD, MSHS, Assistant Professor Obstetrics and Gynecology, UCLA School of Medicine, Consultant, RAND Health

Katherine Harris, Ph.D., Post-Doctoral Fellow, RAND Health

Wendy Landow, MPH, Director of Research, SCVIR

Curtis Lewis, MD, Manuel Maloof Imaging Center, Emory University School of Medicine Michael Mabry, Director of Health Economics and Policy, SCVIR

Tricia McLenny, Assistant Executive Director, SCVIR

Sally Morton, Ph.D., Head of Statistics Group and Director of Center for Research Methods, RAND Health

Paul Pomerantz, Executive Director, SCVIR

Anne Roberts, Chief of Vascular and Interventional Radiology, Thorton Hospital, UCSD Medical Center

Cathy Sherbourne, Ph.D., Senior Health Policy Analyst, RAND Health

Jonathan Sunshine, Ph.D., Senior Director of Research, American College of Radiology

The Conference

At its best, there was a tremendous amount of sharing of information, ideas, and views from all present. There were gynecologists with opposing opinions AND interventional radiologists with opposing opinions. It was most enlightening, however, to discover that all parties present simply wanted more information and were willing to come to the table to discuss what that information might be and how researchers should go about collecting it from patients.

At its worse, I was struck by how much we, as patients, are nothing more than pawns on the chess board of medicine. During the course of the day, there were several times when I felt completely outside of "the game." Sitting. Waiting. Like a pawn on a chessboard. When will I be moved next and who will do the moving? In this chess game, however, I discovered that I could, sometimes, get up and move myself. It was most interesting.

The day was facilitated by Robert Brook (primarily) and Michael Broder. After opening introductions and a verbal summary of our project goals, the "expert panel" members were asked to turn in their "homework." (More on this later.) Dr. Broder then gave an overview and slide show about uterine fibroids. Next, Scott Goodwin did a presentation on the UAE procedure and what is known, to date, about the complications and outcomes. There were some questions and clarifications and limited discussion.

With the base foundation of knowledge and information provided by Dr. Goodwin and Dr. Broder, we then moved on to a discussion of the results of our "homework." Prior to the conference, each expert panel member was sent an Outcome Ratings Form. This form consisted of a long list of items that could be considered in doing a study comparing the surgical outcome of UAE with hysterectomy and myomectomy. It was our job to rate each item on a scale of 0-3 in terms of whether or not we thought it a valid item to measure. The list of outcomes identified pre-conference were:

Short Term Outcomes (<45 days after procedure): death, transfusion, reoperation, operative injury, thromboembolic events, febrile morbidity, urinary tract infection, operative site infection, wound infection, femoral nerve injury, vascular disruption to limb or internal organs due to embolization, pain.

Long Term Outcomes (>44 days after procedure): death, menorrhagia, anemia, pelvic pain, uterine size reduction, urinary problems, mass related symptoms, fatigue, general health index from SF-36, premature menopause, vaginal vault prolapse, adverse reaction to embolic agent, cervical and uterine cancer.

Other: recurrence of uterine fibroids, mental health, social/role function (activity level and time to return to normal activity), sexual function, satisfaction with treatment, cost, length of hospital stay, number of follow-up visits until full recovery.

It's important to explain here that, while patients would like doctors to simply "research all of it," that it is simply cost prohibitive to do so. Each item identified bears its own cost in the tracking process and is multiplied by the number of patients required to get significant data that could be compared across UAE, myomectomy, and hysterectomy. In the end, however, there was little that was dismissed from the Outcome Ratings Form. In fact, numerous items were added to the list during the discussion. Most panel members felt that each and every item was either "important to measure (2)" or "essential to measure (3)." There were, however, a few exceptions.

I raised my eyebrows over the following: 1) mental health issues were rated significantly lower than physical health issues (not by me!) 2) specific items that are known to have statistical significance in the negative for at least one of the options were rated lower. For instance, items that might negatively affect hysterectomy comparisons included febrile morbidity, urinary tract infections, fatigue, and mental health. All were rated lower in terms of importance to measure. Items that might negatively affect UAE comparisons that were rated lower included pain, uterine prolapse, and cervical and uterine cancer. As you can see, if certain items are excluded from the study, the picture painted at the end of the day might well be a rosier one for a specific option. Which is why discussion of the overall ratings for each item was critical.

Before lunch, a statistician from RAND Health (Sally Morton) gave a brief presentation on the variety of different research study designs that are used in evaluating outcome of treatments. She gave us an overview of the advantages and disadvantages of each kind of study and the level of validity given to each kind of study. While this was not new to me, it did strike me as something that most patients (you and me!) do not pay enough attention to when reading and evaluating information about a procedure. Doctors are frequently frustrated by us because we present information to them on something we've read about in the popular media and the scientifically researched background studies simply are not there or have been done poorly. When doctors dismiss us or our questions, this is oftentimes the reason. Okay, admittedly it's also because they're jerks. Sometimes they simply can't see that their response to our questions is condescending, unenlightening, and dismissive. We scratch our heads as we leave their office and then move on to look for another physician who will listen and talk to us.

At any rate, I don't think I've ever met anyone so excited about statistics before in my life. Sally's enthusiasm was remarkable. Perhaps if I could have mustered that level of excitement I would have done better in statistics myself in college. Alas, that was not the case. The numbers she presents are mumbo jumbo to me in terms of how she arrived at the end results of her "power calculations." But, I respect and admire the woman's expertise regarding the information she presents. In fact, all in all, I don't think there could be a better "team" of individuals pulling the data together than RAND Health for this project. The SCVIR has made a wise choice to work with RAND.

After lunch, the remainder of the conference was spent discussing potential research studies. Expert panel members were asked to indicate their preferred method of study designs and the top 4 items they would research. Then, we argued. Discussed. Argued some more. Finally agreed that the study needed to include hysterectomy, myomectomy, and uterine artery embolization (some panel members didn't think the comparison of hysterectomy relevant--truly unbelievable--wouldn't you say?!) and should be a randomized clinical trial of at least 3 years in duration with annual follow-ups to determine age of menopause. Primary considerations for study included relief of symptoms, patient satisfaction, overall functioning (sexual, activity level, etc.) and Quality of Life issues. More details on the specifics of what was agreed upon are to be prepared and presented for publication along with the rest of the information gleaned from the conference.

In addition to the above clinical trial, the SCVIR talked heavily about the implementation of a retrospective registry of all UAE patients. So far, about 1500 women have undergone UAE in the U.S. and, most likely, they will all be contacted regarding this registry. That is, of course, if the SCVIR decides to move forward on the registry. Money, apparently, is an issue.

In fact, money is a BIG issue. I was approached at the end of the day by several researchers who wanted to make it clear that the type of study we discussed and agreed upon throughout the day would cost upwards of $20 million dollars. Something the SCVIR cannot afford alone. In fact, ACOG members must come to the table and work with SCVIR on joint grant proposals for submission to the NIH or even, quite possibly, Congress. It may well take a congressional appropriation of funds to get this kind of study funded. Ah yes. We return to the chess board and the game continues.

How desperately do we want the research done ladies? The pawns have power in this game. Those of us who've already undergone UAE can't really move off the board, but we can choose to not move forward at all if we like. We can sit back and allow the kings and queens to castle and knight each other -- occasionally knocking us off the board. And, in the end, the game ends without a winner but with a most definite set of losers -- you and me and all of the other women out there seeking a more reasonable solution than hysterectomy for treatment of our fibroids.

I know how desperately I want the research done. I've chosen my alliances and participated in the game. I won't be moving off the board any time soon. I'm hoping that there are others that feel the same way and that we, as a group, can affect the outcome of future hysterectomy statistics through our vocalizing of our needs and participation in activities that will help move this agenda forward.

Friday, 25 June 1999

I've started getting more and more email from women asking me about sex. Many, many women experience uterine contractions and "uterine" orgasms during sex and have wondered whether or not this aspect of my sex life has improved with time post UAE. I received the following request for information today:

>I'm wondering if you've had any improvement since last December.

Yes and No. The uterine contractions have not returned (at least not to a point where I can feel them) but my husband has indicated that he can feel and see the uterus contracting. (I found his observation interesting as I didn't know he was paying that close of attention during sex!)

However, sex is NOT a total loss as both vaginal and clitoral orgasms have intensified over time and probably are now much more sensitive than previously. Both play a much bigger role in my sex life these days and I am very lucky to have been married to the same man for 20 years who is extremely willing to help me figure out what is most pleasurable today.

My email from other women who've had UAE and have taken the time to share their sexual experiences has truly been a mixed bag. Many, many women feel a definite decrease in intensity of orgasm or even a total lack of orgasm for the first 3-6 months post-procedure. But, I think it may depend on the severity of the fibroids, their location in the uterus, and the overall health condition of the individual.

Women who aren't as severely impacted seem to be those with 10-12 week size uterus at the very beginning of the "game" of watchful waiting to avoid hysterectomy. Not sure why. Women with much larger fibroids seem to be more heavily impacted.

Also, women who don't experience uterine contractions during sex don't seem to be as heavily impacted.

All in all, I would say that the situation has actually brought me and my husband much closer together physically and mentally and it has, oddly enough, improved our marriage even more so than ever imagined. Actually, we had an excellent marriage before UAE and it only surprised me by how much better that it could get! Much of that is because there has had to be MUCH communication about sex in the last 8 months -- no holds barred -- talking about EVERYTHING. This is the only way that we could capitalize on what feeling I was actually achieving through our sexual encounters. I never anticipated that it would create a closeness with my husband that is truly inexplicable.

On balance -- I'd do it again. This is probably my first admission of this since the procedure was performed -- yes, I would definitely do it again. Even with the impact to my sex life, I can't imagine even HAVING the sex life I have today if I had undergone hysterectomy instead of UAE.

Yes. I'd have UAE again any day over a hysterectomy.

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