December 19,2008

I am still feeling the after effects of chemo, namely joint and muscle aches and pains...not what I had counted on at this stage. My ovarian cancer is in remission with a very low tumor marker of 11, (which was 1800 when I was admitted to the hospital in May). I guess we are all hopeful that it will stay low. The Dana Farber Oncologist has given me a better than 50% chance of being cured, meaning no recurrence of the cancer.

However, I am still at risk for breast cancer, since with the BRCA1 gene mutation there is an 80% lifetime chance of my developing breast cancer in my lifetime....the next hurdle awaits.

We are looking forward to the holidays and going to the Galapagos Islands from 12/28-1/9/09. See you next year!!

Happy Holidays and God Bless us all!!

Final Treatment

November 11,2008

I completed my final treatment yesterday, so with a 3 week recovery, I should feel much better!!

Thereafter, I will be able to go back for check ups at 3 month intervals.  This should give me some time to have fun for the holidays.

Thanks to all of you who have helped to get me through this difficult period.  I feel as if I have been on a treadmill since May.

Let's hope for a nice long remission and happy days ahead!

Maura

Last Treatment Scheduled for November 10th

I am feeling okay after my treatment on Friday. Mostly I am looking forward to finishing before Thanksgiving.

Thank you to all who helped me get through this one! It is great to be near the end.

Our family is going to the Galapogos Islands after Christmas, as a special vacation. We will be going from 12/28-1/9/09.

I will be on a 3 month schedule with Dana Farber for checkups thereafter. By my calculations, my first check up will be in February.

There was frost on the pumpkin this morning.

Sixth Treatment 10/17

I have had a cold, which not dangerous, but hard to shake. Anyway, I am feeling better every day. If you have a fever and low blood counts, you have to be hospitalized and get intraveneous antibiotics. Fortunately, I have not had the two events coincide!!

My sixth treatment has been scheduled for Friday, October 17th. This is approximately 4 weeks from my last treatment. Although I was on a 3 week cycle, I will really appreciate the extra week to recover and get healthy!! After this I will have one more. My new objective is to finish by Thanksgiving and really celebrate. The holiday will take on new meaning!

I hope everyone is not too soggy from the rain!

Chemotherapy Treatment Yesterday

I had my fifth chemo treatment yesterday, which went off without a hitch. I had very nice company from old friends (all from Newburyport) who probably wanted to visit in more pleasant surroundings. It was great fun to have visitors!

I am starting to see that when this treatment is over, life will be very good!!

The kids have resettled in school and life is very busy when they are around. Everyday seems very scheduled. There are no such things as pick up sports in the neighborhood. There is a part of me that longs for a more casual lifestyle without all the driving. But this is the way it is...

Enjoy the Fall weather. I has been glorious for more than a few days.

Treatment Cancelled for 9/9

Because of low blood cell counts, I was not eligible for my treatment yesterday. This was rescheduled for 9/18 (next Thursday) to give my body more time to recover. It is not uncommon after 4 successive treatments, to need a little break.

The good news is that my cancer tumor marker (CA-125) is back to normal indicating that the treatment is working!!

We are back in Concord, settling in for the school year. Emily is in middle school, which starts almost one hour earlier than elementary school!! She likes it and has friends at her middle school (Concord has 2 middle schools). The sixth graders go on an overnight trip next week to meet new friends at the school and do some team building and experiential learning. Hope for good weather!!

Nathaniel has a great 4th grade teacher and other than having a cold, is fine. He is settling into soccer and other activities at school.

It feels good to be back. Bill's father underwent surgery earlier in the week that went fine. We feel lucky in many ways.

I am hoping to get this cancer into remission and finish my treatments by Halloween. Thanks for helping me to hang in. I am more than half way through.

Love to all, Maura

Another Treatment at Dana Farber

I went in yesterday for another treatment, which was okay. Thank you to the June and Betsy, who came in for visits. It passes the time. I probably have 3 to go (9/9, 9/29 and 10/?).
The bad news for me is that I tested positive for a gene mutation (BRCA-1). Unfortunately, it has implications for breast cancer (60-85% lifetime chance). So I was also have to grapple with this issue. I'll meet with the Dana Farber oncologist to discuss this..

Hope you are all well. Thanks for the visits, and cards and letters.
It makes me feel sad that summer is almost over.
Maura

Chemotherapy Treatment Yesterday

I had another chemo treatment yesterday, which went well. It took place at the Dana Farber in their Desens Lab in the lower basement. So I didn't see daylight for 12 hours or so. All went well without a reaction, so things are looking up. Bill and I were back in Padanaram having dinner at 8 pm on Thursday.

Prior to that appointment, I was in Concord for a few days and went to visit 2 friends in Manchester and meet my friend's new horse.

Last Thursday, I had my head shaved in a buzz cut. I am definitely losing hair, but haven't lost all of it, so it may have been premature. (my sister would say "proactive"). My wig hasn;t gotten much wear, mostly I like baseball caps and beach hats. People are very nice and polite, even hold doors for me. I am surprised how something I dreaded has not had the huge impact I would have expected. It is still a shock to look in the mirror, but I am getting used to it.

The children are fine, thanks to my sister and sister-in-law. Nathaniel has been enjoying his Rocketry class at Friends Academy, sailing class at New Bedford Yacht Club and his Orton-Gillingham tutor. Add to that playing golf and swimming, and you have a busy happy boy. Emily is also taking sailing classes, and hanging out with friends. She has done a gymnastics class here, in preparation for the Fall. They seem happy and content to be here with cousins and aunts and uncles coming and going.

My next treatment is on 8/19 at the Dana Farber, if anyone wants to visit. It is a long time to be there starting at 7 am. Ruthie will stop in on 9/9. I think it is too long to ask anyone to stay the entire time although Bill likes to be there at the beginning and the end. (which has been 5:30 or 6:30, but could be earlier)

I am off to an accupuncture treatment to see if it gives me some relief (later on). The peripheral neuropathy seems better. There are various aches and pains in few days, which I would like to have some relief from.

Best to you all. Keep the cards and letters coming. They help cheer me up!! Maura

Midway Through My Treatment

My next treatment dates are 7/31, 8/19 and 9/9. These will all be done at the Dana Farber Desens Lab and are contingent upon my recovery from the last treatment. I have doctor's appts. on 7/29 and will spend 3 days in Concord with Bill, who is getting a little lonely by himself. This treatment is different from the last treatment because it includes Taxol. I have had some joint pains and fatigue, unlike my first treatment which was Carboplatin only and asymptomatic. I am in a period now when I have to be careful about low blood counts.

I am lucky to have a supportive family around doing everything and keeping the kids occupied. Also I still have hair, which I may not in the next couple of weeks. I am happy to be here, but avoiding the sun is no fun. I am not as active as I usually am. I enjoy swimming, but can't really sit on the beach. The water has been delightful, but I go late in the day.

I hope you are all enjoying the summer!

All's Well from the ICU

I went in Monday night to the Brigham ICU and actually got some sleep. Then I had an 8 hour influsion of both the Taxol and Carboplatin without incident. I left at about 6:30 pm and Bill and I went to the Elephant Walk for dinner. Then I spent the night in Concord. My sister, Susan brought me back to Nonquitt today via Boston Interiors in Stoughton. All is well. I hope that you are all enjoying the summer. It is a little cool here, but I assume warmer elsewhere.

Maura

New Doctor at Dana Farber Cancer Institute

Hi folks!

I have just completed another round of doctors visits, with the following results. Some doctors at Dana Farber have developed a desensitization protocol to deal with allergies such as mine. Since taxol and carboplatin are the world standard treatment for ovarian cancer, with seemingly good results (extended survival rates, mainly) it is desirable to integrate the taxol into my regime. To do so, I will have to be admitted to the Brighams ICU for the first round only. I will probably be there for 24 hours but will not know the day until the bed literally becomes available. (Please don;t call and ask when because I won;t know). It will be sometime the week of July 7th. There will be a one-on-one nurse with me bedside and they will start the infusion with a very diluted version of taxol (1/100th of the dose). These will be gradually increased over a long period in 12 increments -the largest of these being the final dose. They will keep me there overnight to see how I am doing. There is a very small chance of anaphalyxis, which they can deal with immediately. It is safer for me and is very controlled. It is a protocol which has been tested on 413 patients and I feel satisfied with the results. Subsequent treatments can be done at the Dana Farber in their desensitization unit, which has a patient nurse ratio of 3:1. It all sounds very hopeful. In total, I will have 6 rounds of chemo,every 3 weeks. Those dates can;t be set up until the next one is, which is the hardest to schedule

This weekend we move into Nonquitt and leave until Thursday, at which point we will move down for the whole summer. I am looking forward to being there although I have been told that I will have no hair and that the sun isn;t good for me....it will be a wierd summer. Lots to look forward to this summer.

In other news, we lost power and phone service for 14 hours after a microburst hit at 5:00 on Tuesday. I was not here (enroute from the hospital, of course), but Amanda took the kids and dog out of the house immediately and called me from her car. It was very scary because it took down alot of trees around us and one in our yard, which wiped out the utility wires to our house. Some fell on cars with people stopped in traffic on Elm St. and one fell on the train tracks. Anyway, bad news on our landscaping. We have a big gaping hole to Elm St. in front of our house. Fortunately (although not so good for insurance reasons) it did not hit anythingelse. The tree was a huge spruce which provided good shelter from the road.

I am feeling surprisingly energetic these days. It is telling that I feel better as a chemotherapy patient than I did full of cancer. What a relief to get the bulk of it out of my body. However, a few pesky cells remain which need to go away....enjoy your summers, full of happiness!!!

Round Two of Chemotherapy

Yesterday, I had my second allergic reaction to a taxol based drug. The doctors at Beth Israel were able to administer the carboplatin which is an important part of the chemotherapy. However, they would feel better giving me another version of the taxol in a more controlled environment. So my care will be transferred within the Harvard Cancer Center to Dana Farber Center. I will be under the care of an allergist and an oncologist. The taxol based drugs have been very effective in stopping the cancer in advanced stages, so they really don't want to give up on the best possible treatment for me, which I appreciate.

I feel good today...a little tired but not bad, all things considered. I went for a nice walk this morning with the dog and had a little nap. What more can a girl ask for? I have been the fortunate recipient of all your lovely cards, letters, and boxes of goodies. Very much appreciated!! Thank you, thank you, thank you!! Now for this broccoli craving I have....

Chemo Delayed for a Day

In spite of being at BI all day for a chest x-ray, blood work and meeting with my doctor, I have to go back tomorrow to try another combination of taxol called Taxatir. I was premedicated, but had an allergic reaction to the taxol or to the agent which it is suspended in. They couldn';t even start the carboplatin because the agents work better together and they prefer to do the taxol first (for some reason). This other combination has a different side effect profile. Since it has the best efficacy, they will try tomorrow starting at 10. So we will update the blog as things develop.

Maura

Nonquitt Awaits ...After Chemotherapy

I went to Nonquitt yesterday to view progress on our house...another house project wrapping-up (fortunately). I actually came home and said to Bill, "We are going to have a great summer!!". So Nonquitt is evidently the tonic that I need for my recovery from chemotherapy. It was a pristine, dry gorgeous day without many people....not exactly like summer, but a little taste of the goodness ahead. The water is still cold, but clear. The house looked great and the gardens need a little work (good..a summer project.)

Anyway, my path to Nonquitt this year is being paved by my sisters and sister-in-law who are going down there to clean up after the renovation. This is getting better and better. Bill had this vision last year, and although I wasn't quite up for it, I am glad that we did it. So happy to have outside showers and cool tile everywhere. It really will be good.

Unfortunately, I have a little detour to Beth Israel on Monday and again on July 7th, after moving down there. (And every 3 weeks thereafter.)It will be nice to have it all set up and be in residence for the summer. The two Bills will be commuting from Boston (maybe not daily) and my sister, Susan will be there the entire time...so glad we have bedrooms for everyone!! I may be up for visitors so check in.

I have to keep reminding myself that although chemotherapy is toxic, it is potentially lifesaving. Hope this all pans out...

Another Week and the Saga Continues

Since last week, my doctor, Chris Awtrey asked me if he could take my case to an ethicist at Beth Israel. Here is the outcome. He suggests that I write a letter to the acting head of OB/GYN, Dwayne Pursley, (former neighbor on High Street, Newburyport). From there, he is hoping that it will be heard by a medical review board at Beth Israel and perhaps used as an instuctional case at Beth Israel. I would not pursue this in any other forum.

I developed Stage IV, grade 3 ovarian cancer while being monitored. This is the most advanced form of cancer which has the worst prognosis. There is evidence in prior ultrasounds of things that should have been investigated and weren't. Of course looking at this retrospectively makes things much more apparent. It will not change the outcome for me, but may help someone else.

History: I was an infertility patient 1993-1996 and was fortunate to have conceived both of my children using IVF. I was also exposed to large doses of follicle stimulating hormones, which raise the risk of cancer of the ovaries and breast. (The medical community has not definitely established this. Call it my own hypothesis: If less exposure to estrogen provides protections from ovarian and breast cancers, than it stands to reason that more exposure would present more risk. It has yet to be definitely proven, but I was aware of the potential risk.)

After having children, my OB left Beth Israel because of her own family vs. doctor lifestyle and did not recommend a replacement. I found a doctor through Boston IVF who has been my gynecologist for the past 10 years. She is not a BI doctor, but has hospital privileges. She and I set up a monitoring system to allay my fears which involved ultrasound monitoring every 6 months and a blood test called CA-125 (which is 60% effective). That is as good as it gets for screening for ovarian cancer. There are other things currently being studied which look promising. Anyway throughout this process, there was a small cyst discovered in 2002 which was 2 cm in diameter, benign appearing. " Cysts come and go...not to worry." But this one kept persisting.

In all my discussions with my doctor, this was presented as a simple, fluid filled cyst which was benign, benign, benign. There is no reason to remove it because when you undergo menopause, oftentimes these cysts go away on their own. This conversation continued until 12/07 when the cyst had grown to 5.5 cm, but still simple and benign appearing. When I asked about consulting an oncologist, it was dismissed. She said that they are only removed if you are experiencing symptoms.

Now, Dr. Awtrey tells me that in my ultrasound studies as early as 2004, he notices an echogenic nodule which connected the cyst to the ovary and provided blood flow. This got his attention because cancer and even precancer develops its own blood supply. However, he is developing this study retrospectively in June 2008.

This was never discussed and unfortunately although it is noted in the reports, I never got copies of the actual report, but relied on my doctors interpretation which failed me. I had an appointment with both my new BI gynecologist and BI GI doctor on May 21st and May 13th respectively. I never made it to these appointments because I was hospitalized on May 10th for a large 12 cm mass which had taken the place of the simple cyst attached to my left ovary. The ovaries were both cancerous, as was the cervix and a block of tumor which had grown into my rectosigmoid colon. In fact, it was the tumor block in the colon which was producing the most symptoms as I was complaining about pain in my left side and the inability to pass stool reliably. The barium from the CAT scan finally proved impassable. I was most focussed on the GI symptoms because I had had so much pain related to eating.

Unfortuntely, by the time I was hospitalized the cancer had metastasized and spread around my abdomen and passed through the lymphatic system to the pleural cavity around my right lung. I was starting to develop symptoms which I thought were asthmatic due to seasonal allergies. That in combination with a crushed bladder is what got me to the hospital. The abdominal surgery went well, since major organs weren't involved. The surgeon feels he removed all of the visible tumor cells. Unfortunately the cancer in the lung is inoperable, so we are relying on chemotherapy to attack those tumor cells.

Let's hope for the best outcome. It may be a case study to watch!

Bill and I are back from a long day at the hospital. It appears that my lung situation is stable. In fact, the doctor even said that it looked good!! I am planning to start the standard chemotherapy on Monday 6/16. It will be a 5-1/2 hour experience every 3 weeks. I will follow a pretty well proven regime of chemotherapy- Taxol and Carboplatin. Until I start, if I will have side effects and which ones will affect me when.She said to expect the second week to be the tired one. Otherwise, I should feel pretty good (as I do now). I am disinclined to participate in a clinical trial forAvastin and Erlotinib (two molecular agents which inhibit the growth of blood vessels). I guess my true nature of going with the proven agents is coming through. I intend to pursue complementary therapies of an Eastern sort, including acupuncture for nausea, yoga and Reiki for relaxation and strength. I want to maintain a positive outlook throughout since my healing has gone well to date. I think we are both feeling fairly optimistic at this point. Enjoy the weekend and take me off your worry list. It may not be the best summer but I will be fine!

Staples Out and A Walk

This weekend was really big for me. I had my staples out, which was a great relief and had a walk to a friend's garden. Of course, I hope everyone has been enjoying this perfect weather. Everyone says that I should be resting up to heal faster!! Is it possible to fast track this process? I really am better every day.

On Wed., a group of doctors will consider my case. Since there are multiple things going on, it might work better to group think this one. The tradeoff is to start the chemotherapy ASAP to attack remaining cancer cells, particularly those in my lung sac (which are inoperable); vs. letting the body finish its healing from the surgery. It is a decision best made by the medical minds involved. On Friday, Bill and I go in for a chemotherapy meeting and follow up X Ray to see what is brewing in my chest. Again, we will know more afterward.

I have my own complicated schedule in June...all my favorite things converging into weddings, graduations and parties to celebrate the year! As long as I am feeling ok, I can go to these events and enjoy them. However, some will have to go by the board....and I won't know until I am there. A very difficult thing for me..

Lots of uncertainty but I am optimistic. I have a wonderful family, friends, and team of doctors. I couldn't be luckier!! Lots of love to all of you and many thanks for your help.

What a difference a week makes!!

So much better today. The surgeon came to the house to remove staples today!! Is this an unheard of service??? I am laying low this week. A new nanny is starting for the children. She will come every weekday from 1-7. Keep your fingers crossed. She is my savior. Friday I have an appointment with the chemotherapy doctor. I will have a chest x-ray which will determine how long we can wait until we start the chemo. If the fluid around my lung and heart is starting to build, then I will forego some recovery for an all-out attack on the cancer. This is a real trade off, one I would prefer not to face, but I will get good advice on this. Enjoy this glorious weekend!! Nathaniel and Bill say that it is crystal clear and beautiful on the Island in Maine. I can life vicariously through all of you enjoying this start to the summer season!!

Lots of love to all,
Maura

Home!!!

I am home and feeling much better after 9 days in the hospital!! I am eating solid food, like english muffins and applesauce and feel I will be adding to that soon! Thank you for all your prayers, wishes and cards. They mean so much!

I am optimistic about my recovery. I need to get strong for chemotherapy starting in June. It will continue for 18 weeks, once I start. Unfortunately, I may lose my hair, but hoping to have some wigs or scarfs to go out!!

Best wishes. Maura

Welcome to MAURA MATTERS! We have created this blog to keep you up to date on Maura Perkins' recovery from cancer surgery. So many people care about Maura. We know she matters to you. Our goal is to keep you up to date on her recovery. As many of you know the problem was first discovered on an ultrasound she had on May 9th. She had a CAT scan on May 11th and was admitted to Beth Israel Hospital that evening. The surgery was performed on May 15th. She will be released from the hospital on May 20th. Thank you for all the help and support we have received to date.