Recovery Journal - Part II: The path is not always straight

My surgery was a week ago today. When I awoke this morning a few minutes before 7 a.m. I thought to myself, "last week at this time I was in pre-op surrounded by my doctors who were asking if I had any last minute questions." This week I am in my own bed and pretty comfortable.

"Not bad," I thought.

But the week has not been what I expected. I had been told by a multitude of women who have all had the same surgery that you feel a little better every day. All said that the swelling and gas both inside and outside the digestive system cause the most pain and that this gradually gets better every day. So this is what I expected.

My surgery was on a Thursday. I came home from the hospital on Friday. That day I could not sleep on my side because my digestive system was just too painful. I don't really like sleeping on my back but it was the only real choice the first three days, after that it has gradually improved and rolling over in the middle of the night is no longer painful. That part of the progress has been good. By Saturday I already found it easier to get up out of bed, although I did have sharp pains in my shoulders that I have been told are small gas bubbles that found their way up once I became more vertical. Every day I went outside for a walk two or three times, just around the block on Saturday and a bit longer on Sunday and Monday. By Monday, I was happy with my progress. My abdomen was still very swollen, but I was walking more normally, getting out of bed easily and primarily relying on ibuprofen for pain.

Unfortunately, I developed a fever Monday afternoon. My doctor had said to call if I developed a fever greater than 101 degrees. When my temperature went from normal to 100.8 in less than an hour I called before he left for the day. He asked me a series of probing questions and none of my answers indicated other symptoms indicative of a post operative infection. He told me to take Tylenol to keep the fever down and to call him in the middle of the night if necessary if it went up. With Tylenol every few hours I was able to keep the fever mostly under 100 degrees but I felt awful. I had that all over achy yucky feeling that accompanies a fever. The next day I went in to see my doctor who confirmed with a battery of tests and a physical examination that there was no sign of an infection. I felt rotten, but there was no explanation other than this might just be my body's way of dealing with the assault of the surgery. I didn't like the answer -- especially as the fever didn't start until four days post-op -- but I went home to take more Tylenol and rest. On Wednesday the fever was going up despite all efforts to beat it back so my doctor sent me for an abdominal ultrasound. All findings were normal and I had no other symptoms of having picked up a virus: head, throat, lungs, stomach, all were fine.

On Wednesday evening the Tylenol seemed to get an upper hand on the fever and bought it down to almost normal. It is amazing how much more human you feel when you don't have a fever and don't ache all over. The fever did not spike again in the middle of the night as it had the two prior nights and today, I feel pretty much human. The fever did not return all day until late afternoon, and now it is only slight. So I think I have rounded a corner.

The one week post surgery report is: abdominal swelling is already noticeably less, not gone, but I can put on jeans that were nowhere close to closing on Monday; my only pain is in the bottom of my pelvis at the internal surgical site and it is wholly managed by a little ibuprofen; my digestive system is slowly returning to normal; I get tired easily (my doctor told my husband to expect me to do half as much half as fast and to need to nap frequently). Not bad for one week post-op, but I could have done without the three days of mystery fever.

And now a shout out to my husband and my friends who have taken amazing care of me. Friends have brought food every day, have come to stay with me while Matt has been to work, have driven me to doctor's appointments, and have even run errands and folded laundry. And then there are my long-distance and online friends who have showered me with words of encouragement. How lucky I am to have such an amazing group of friends in my life!

Thank you all!!!


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Joi's prophylactic surgery is ALL CLEAR!

Well I am perfectly happy to be the one to share some wonderful results. Joi, having had surgery just two days ago, is home recovering and I got to be the one to call her with the excellent news that the final pathology report from her operation is completely normal. Her preventive surgery is a success! As she mentioned in her last post though, in 3-6% of surgeries in BRCA carriers undertaken as prophylactic salpingo-oophorectomy (removing the ovaries and tubes), cancer or precancerous cells are found. This is why the medical genetics and oncology communities both have position statements mandating that this surgery, while straightforward from a technical standpoint, should always be done with a GYN Oncologist. Many women, like Joi, have a long standing and trusting relationship with their regular OB/Gyn. It is not only acceptable, but terrific to have your gynecologist scrubbed in on the case and involved in the operation. Fortunately, nowadays most gynecologists are much more aware of the recommendations from the hereditary cancer societies as well as the need for specific instructions or protocols for the pathologists to examine the tubes, ovaries and uterus (if removed) very carefully and systematically. But you have to be your own best advocate, so make sure all of your questions are addressed before you set a surgery date.
Congratulations Joi!

Recovery Journal - Part I

My laparoscopic bilateral salpingo-oophorectomy and laparoscopically assisted vaginal hysterectomy were two days ago. According to my doctors, everything went "perfectly." My team of doctors included a gynecologic oncologist and my regular ob/gyn who delivered my babies. Dr. Mandel has been by regular gynecologist for more than 20 years; he delivered both of my children; and he is the person who first suggested that I consider BRCA testing because of my family history. Since I tested positive, he has been an integral part of my health care team and has done much of my screening, including seeing me at the last minute over his lunch hour on a Friday afternoon because I had been having abdominal issues that worried me. "Come on in now and we will do an ultrasound so you don't worry all weekend," he said. Even though I decided that my surgery should primarily be done by a gynecologic oncologist because of the small but not insignificant risk of finding a small ovarian or fallopian tube cancer during the surgery, I was thrilled when he agreed to be on hand to assist. He held my hand and reassured me in the pre-op room and helped me onto the operating table in the OR. His was the last face I saw before the anesthesiologist put me under.

Some gynecologists feel threatened when a high-risk woman seeks to have preventive surgery with a gynecologic oncologist because gynecologic surgery is a routine part of their practice. But because prophylactic surgery in a BRCA-positive woman can turn up an otherwise undetected small cancer about five percent of the time, my personal feeling was that this was significant enough to warrant having the surgery done by a cancer expert, a gynecologic oncologist. I feel lucky that my regular gynecologist and my gynecologic oncologist were happy to work together on my care. I recognize that not all doctors put aside ego to the put the needs and desires of the patient first, but my team clearly did, and my experience was less stressful because of it. In the pre-op room my anesthesiologist said I was one of the most calm patients he had ever had. My blood pressure was low, my heart rate was low, I was calm and I had no anxiety whasoever. I was at peace with my decision and I was totally comfortable that I was in both expert hands and caring hands. Going into surgery with someone with whom I had a 20-year relationship meant that I knew Dr. Mandel would take good care of me. I found this deeply comforting.

Post-op

I awoke in post-op shivering, just as I had after my mastectomies, which is my body's reaction to both pain and anesthesia. I really was not in that much pain (from what I can recall through the narcotic haze) so it was probably mostly the post-anesthesia reaction. Nonetheless, my nurse put the familiar green pain medication pump into my hand and instructed me to push the button, which I did. I dozed on and off over the next hour with my nurse waking me to remind me to push the pain medication button pretty frequently. The pain was so much less than the post-mastectomy pain that I did not feel like I needed as much pain medication but I obediently followed her instructions whenever prompted.

One of the surprises in the recovery room is that one my my nurses was Joi, spelled exactly the same way as my name. I think she is the first person I have ever met with the same name.

I recall my gynecologic oncologist visiting me in the recovery room and telling me that the surgery had gone perfectly and that from his perspective, it was "textbook." My final pathology report will be ready in about a week and am hopeful that it will not contain any surprises.

I spent one night in the hospital and am glad that I did. I know some women who do go home the same day after a laparoscopically assisted vaginal hysterectomy but for me I am not sure I could have handled oral pain meds right away so I was glad to be in the hospital with the IV pain meds the first 24 hours.

My surgery was at 7:15 a.m. and my doctors did not allow me to have anything to eat or drink until dinner, when I was allowed only clear liquids: broth, tea, jello. To my surprise my digestive system did not react well to dinner, and even though it was all liquids it created a lot of digestive gas, which significantly increased my pain. The day after my surgery I was up early for my first "walk," which only involved a shuffle to the nurse's station and back but by mid morning I was gradually being unhooked from the medical technology in my room in preparation for going home.

My only hospital visitor was Ora, my wonderful co-author and friend who brought a beautiful bouquet of roses that were admired by everyone who entered my room.

By lunchtime my nurse unhooked my IV pain meds and brought me applesauce. Unfortunately I fell asleep before taking my first oral pain medication and woke in significant pain. The first dose of oral pain meds (Percocet) failed to bring my pain under control and I found myself once again shivering uncontrollably, which only made the pain worse. My nurse brought a second dose about half an hour after the first one and by a little more than an hour after I awoke the pain was back under control, but it was a long hour.

We timed our trip home in the afternoon so that we left the hospital shortly after a dose of pain medication to make the trip home as tolerable as possible and I had brought along a pillow for the car ride to keep the seat belt from irritating my abdomen. Typical Friday afternoon LA traffic meant that we meandered along at a snail's pace, which was actually OK with me. Car travel when I am taking narcotics tends to make me carsick but we never went fast enough for that to be an issue. It was nice to get home and crawl into my own bed. It was also good to get into my own shower and come out clean!

Today I am just more than 48 hours post-surgery and I am already feeling better. The more I get out of bed and move around the better. It seems to help move the gas around. My pain today is under control with minimal narcotics. Prescription strength ibuprofen seems to manage most of the pain. Today is better than yesterday, and I expect that I will continue to improve at a relatively steady rate.

I will keep you posted!


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Please Join Kickin' Cancer 2010

On August 5th I had surgery to remove my ovaries plunging me into instant surgical menopause. I wish I didn’t have to do it but as you know I carry a mutation on the BRCA2 gene that raises my risk of developing ovarian cancer far above the average woman’s risk. My risk could be as high as one in four. Preventive surgery is the best way to protect my life from this disease because unfortunately, ovarian cancer is rarely detected at an early stage when the disease can be cured.

On of my first blogs was about the desperate need for increased funding for ovarian cancer research, especially research dollars for early detection of the disease so that it will not continue to claim so many lives. Millions of dollars have been raised for breast cancer research over the past three decades because women, multitudes of women, have joined arms and walked to support this important cause. Progress is being made in breast cancer battle, less so with ovarian cancer.

So this year, on Sunday, September 19, 2010, to celebrate my recovery from surgery to remove my ovaries I will join more than 3,000 women, men and children in the 9th Annual KICKIN’ CANCER! 5K Walk/Run & Women's Healthcare Expo to raise funds and awareness for the early detection and prevention of both ovarian and breast cancer. I suspect I will be a walker and not a runner this year; but I will nonetheless be there to celebrate life, being healthy, and this great cause.

I have been involved with FORCE, Facing Our Risk of Cancer Empowered, for the past several years. FORCE is a national organization that supports and advocates for women like me, women at high risk for both breast and ovarian cancer. FORCE is a truly wonderful organization that is making a difference in the lives of high-risk women and men (yes, men do get breast cancer too and do carry mutations on BRCA genes). FORCE is partnering with the sponsor of KICKIN’ CANCER, the Lynne Cohen Foundation, to raise money for this important cause and I am the captain of “Team FORCE.”

In addition to funding important research into ovarian cancer early detection and cures, the Lynne Cohen Foundation recognizes that saving lives now means providing genetic testing services and breast and ovarian cancer screening services to women now. Unfortunately, not all women have health insurance that will pay for these services. In response to this need, the Lynne Cohen Foundation has established a network of preventive care clinics at major cancer centers around the country. These preventive care clinics are for women at high risk for breast and ovarian cancer, including women with BRCA mutations, women previously diagnosed with breast or ovarian cancer, relatives of women diagnosed with breast or ovarian cancer, women diagnosed with precancerous conditions that raise future risk of disease, and Ashkenazi Jewish women. One of these preventive care clinics is the Lynne Cohen Foundation Preventive Care Clinic for Women’s Cancer’s at USC/Norris Cancer Center here in Los Angeles. Women who participate in this clinic receive breast and gynecologic exams and screening; genetic counseling; lifestyle counseling; education about breast and ovarian cancer; and access to the latest early detection and prevention trials for women’s cancers. Genetic testing for BRCA mutations may be appropriate for many of these women but because of the high cost of genetic testing, funds are not always available for this service.

One of the goals of Team FORCE is to make sure that no woman who needs genetic testing for breast and ovarian cancer risk is denied access to this lifesaving information because of cost. For this reason, half of the funds raised by Team FORCE will go to the Lynne Cohen Foundation Preventive Care Clinic for Women’s Cancer’s at USC/Norris Cancer Center to endow a genetic testing fund. The other half of the money raised by Team FORCE will go to FORCE to support ovarian cancer research and awareness.

Did you know:

• Ovarian cancer is the deadliest gynecologic cancer, striking more than 22,000 women in the United States and killing more than 15,000 each year.

• Invasive breast cancer strikes more than 200,000 women in the United States, killing approximately 40,000 each year.

• 20,000 women each year are diagnosed with hereditary breast or ovarian cancer.

Identifying high-risk women makes it possible to screen for the disease and to take preventive action. Currently, the Lynne Cohen Foundation has more than 3,000 diverse women registered in its high-risk preventive care programs nationwide. These unique programs provide women with a comprehensive approach to preventive care, individual risk assessment, and access to the latest clinical/research trials. Data from these programs is collected in the Lynne Cohen Data Registry for collaborative, multi-institutional research.

I believe that this collaboration between FORCE and the Lynne Cohen Foundation is important and well worth the effort. I am particularly proud of the fact that the Foundation has raised more than $6 million to support research and preventive care for the early detection and prevention of ovarian and breast cancer since 1998.

Here is how you can help:

1. Join Team FORCE and come out on September 19th and walk (or run) with me! To join visit www.kickincancer.com, select “Register Here,” select “Join a Team” then from the drop down menu at the bottom of the box select “Team FORCE.” Be sure to enter the discount code “force” on the individual registration page and you will receive a $5 discount on registration for the event.

OR

2. Sponsor me or another participant on TEAM FORCE! To donate online, visit www.kickincancer.com. From the home page, select “Sponsor A Participant” and enter my name to ensure I receive credit for your donation. Checks made payable to KICKIN’ CANCER! can be mailed to P.O. Box 7128, Santa Monica, CA 90406-7128. Please include my name in the memo line of your check. Donations are tax deductible as provided by law.


Thank you for considering this request for support. If you have any questions about the Lynne Cohen Foundation, please visit www.lynnecohenfoundation.org, call 877.OVARY.11, or email info@lcfocr.org. For information about FORCE please visit www.facingourrisk.org.


Thank you for supporting women's cancer research!

Sincerely,
Joi

Donating my tissue to research

So my bilateral salpingo oophorectomy is now less than 72 hours away. It is time for me to make final decisions and preparations like what type of hormones I will take (no, I do not intend to go cold turkey); what I will pack for the hospital (something with no waistband); and what flavor jello I want to eat (not lime). Oh yes, and to cook and freeze some food for my husband (done). Fortunately many of my friends will be bringing meals over the next couple of weeks so we won't starve during my "vacation" from the kitchen.

Mentally, I am ready for this, although I do not look forward to it. I feel about this surgery much as I did about my mastectomies three and and half years ago: I know I am making the right decision, but I don't like it. I don't like that my BRCA2 mutation is forcing me to tinker with nature and run headlong into surgical menopause with all of its side effects at the age of 46. One of my college roommates has already been through natural menopause, which clearly happens to women my age so even though my ovaries are cranking along, I am likely only cutting short their life span by a few years. In the moments when I question the timing of my decision (not the decision to remove my ovaries, which I see as clearly the right decision, but the timing of the surgery), I remind myself that natural menopause is not far off; that I am lucky because I have not had cancer and am therefore eligible to take estrogen to ease my way through the transition; that my bones are currently healthy; and of course that I have outstanding doctors taking care of me.

My husband and I had a wonderful trip to Utah last week. We had an adult-oriented week because our children are away at summer camp for the next few weeks. This is the first time both our children have been gone from home at the same time for more than a weekend. It was truly nice to remember how much I enjoy spending time with my husband. We hiked in the beautiful mountains around Snowbird and Alta, where the wildflowers are at their peak. We learned from and were inspired by the incredible scholars at the Wexner Heritage Program's Summer Institute. And for the most part I put the reality of my upcoming surgery out of my mind.

But now that I am home, reality has set in. Yes, this is going to happen, and it is going to be very, very soon. Surgical menopause is no longer something in the future, it is happening this very week. Quite frankly, I am feeling a bit depressed and I have been somewhat moody with my husband today. And I warned him that it might get worse before it gets better as my body adjusts significantly reduced hormone levels. I am going to take some estrogen, in the form of a patch, which I hope will make the ride less bumpy.

A few days ago I received a call from the Gilda Radner Hereditary Cancer Detection Program, which I enrolled in four years ago when I discovered that I am BRCA2 positive. They wanted to know if I would be interested in donating some of the tissue removed during the surgery that would otherwise be discarded to research. For me, this was an easy decision, yes! I am a research junkie, constantly looking for new studies with better or newer information to help me make these hard decisions. If my tissue, which would otherwise be "trash" can potentially be of some benefit to future generations of women then I am happy to participate.


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