A Very Expensive Enema

So for a little weekend excitement, we visited the El Camino Hospital ER on Saturday night!  My right side ache had continued over the weekend and that had cancelled our trip to my brother's house.  Early Sat. evening my left ankle and foot started swelling.  I called the doctor and got the on-call Dr. Pisani who felt concern for a blood clot since it was just swelling in one leg.  So off to the ER we went at about 9:00pm.  Long story short, an ultrasound of my left leg was negative, although the two legs looked so different from each other! The CT scan of my abdomen for the side ache showed POOP!  No kinks or obstructions in my bowels, just that they were full!  So after six hours, we were sent home with the good wishes that the CT prep would aid my in elimination, which it has!  I am going pretty regularly now, but I still have the side ache, so go figure???  I have a Drs. appt on Wed. with blood work, and chemo on Thursday so we'll see what they say about that.
Friday morning we visited John's barber, Sylvia.  My scalp was constantly throbbing from the follicles dying, so we got me a buzz!  I have to admit, it's a lot easier and the scalp stopped hurting.  I have a couple little hats so far and ordered a bunch from a catalog, so look for the girl in the bonnet!!
Thank you to the Oriental Methodist Church Shawl Ministry and our friends Donna & Jerry Luh for the beautiful prayer shawl.  The Luhs picked the yarn--the color of the conch shell--and I love it!  It's so soft to wrap around me and I feel the hugs it brings.  Thanks for checking in!

Where do Side Aches Come From?

The last couple days have been like old times~well, almost!    Sleeping through the night, having a HUGE appetite, wanting to get dressed and get outside!  John and I went out to lunch to our favorite Mexican restaurant.  I got Giants tickets for John and David for the Wednesday night game that ended up being a pretty cool game!  The off week from Chemo will definitely be a catch up week.  I spent a morning with my Mary Kay director, Gayl Del Pero and enjoyed revisiting the product line, ordering new make up and skin care, catching up on the gals in our Unit and just playing "girl stuff".  This really cheered me up as my hair is starting to fall out and it helps to think of other ways to feel pretty.  My sister and I went shopping for hats and scarves and eventually I am sure I will invest in a wig.  The only problem has been a nagging side ache, that has progressively gotten worse over the past three days.  We had planned to drive to Redding tomorrow and spend the weekend with my brother, Bill and sister in law Kathy, enjoy time on their houseboat and celebrate Kathy's birthday, but this aching side got me back to the doctor this morning.  Dr. Chen and Eva, his nurse practitioner, both examined me.  Eva ordered an ultrasound which I had to wait until 5:15 tonight to have because I had eaten pancakes for breakfast!!!  The good news is my healthy appetite has gained me 6 pounds!!!
The ultrasound was negative, but the good is knowing both kidneys are functioning and not retaining any fluids.  The reason for the side is unclear.  My instructions are to resume my pain medications around the clock and be more regimented with my colace and gargling regimen.  The side ache persists after being on my feet for awhile, so I guess that means more rest needed.  I am finding patience and flexibility are key and trying not to sweat the small stuff.  I appreciate the love and support from my family, I know this is no picnic for them,  and I thank them for taking care of me.
Thank you to Lauren for a fabulous meatloaf dinner delivered to us Monday night and for joining us!

Cycle 1 Day 8 Results

Thursday morning, John and I left for the Infusion Center to arrive for our 9am chemo.  I kept thinking about that song, Tonights' gonna be a good night--I love that song.  This time they up'd my benedryl due to a late flushing reaction last week.  Chemo was IP TAXOL, IV Saline  and they decreased the saline by 1 litre due to a leaking out my laparoscopy incision last week.  Infusion went really well, I rolled from side to side to keep the fluids even and felt very comfortable when I left at around 2:00.  So comfortable that we went to Burger King and John got me a baby cheeseburger and baby chocolate shake for the ride home!  I gobbled it down!  The evening went well, minimal discomfort and I was excited for a good dinner of BBQ chicken, rice, salad and vegetables.
Around 11:30 I started a little flushing again, so took 50mg Benedryl.  It was more comfortable for me on the couch to lay on my side, so I elected to stay there.  About 4am, the vomiting began, several sessions every hour until 7:30am.  I didn't sign up for this!!!!  Beyond exhaustion, I was able to sleep for a couple hours and then we went back to the Infusion Center to their Urgent Care center.  My nurse Katie, met us there.  When she found they wouldn't be able to access my IV port and I would have to get another IV put in,  she had John put me in a wheelchair and take me back downstairs to the Infusion Center where they found me a chair and Katie got in her scrubs and accessed my IV port!!  I stayed for two hours of saline with potassium and an additional anti nausea medication IV that should work for several days.  I slept through the whole thing, but my wonderful husband was there every minute and my sister waiting at home for our return.  I slept most of the evening and all through the night.  Today I am living the BRAT diet--remember that one from raising our kids: bread, rice, applesause, tea.  I had a shower a few minutes ago and I'm feeling back in the saddle again.  Hopefully by mid week I'll be in shape to enjoy the next week before we begin Cycle 2.  Thank you for the emails, gifts, cards, love and support.

Learning Curve for sure!

We have definitely experienced a learning the past couple days.  Friday night I experienced a "leak" out of one of the laparoscopy incisions, which meant pressure bandages applied and changed during the night.  Worse part was the nausea set in!  OMG, I don't like this at all.  I have pretty much been at the mercy of the couch all weekend, with the greatest caregivers by my side 24/7.  By Monday, I was able to shower for the first time in days!!  John took me to my check up with Bella and she helped make us a schedule of my nausea meds and scheduled steroids, etc.  I have been able to eat occasionally and when I crave something, my sister or John have cooked it right up, so a cheeseburger patty,  lasagne, biscuits, a Starbucks pumpkin scone, a baked potato, Chelsea's banana bread and Pat Lind's coffee cake.  What a diet!  Thanks for checking in, for the calls and notes.  Wish I felt like visitors but for now, I'm just going to try to sleep.  Tomorrow I have blood tests and then Thursday is IP TAXOL Chemo at 9am.  Then two week reprieve!!

 YAY! Thank you to my nephew Michael for stopping to see me and bringing me a beautiful book.  Also, I received a prayer blanket from our friend, Sharon Meegan that was made by her Prayers and Squares Group in Romona, Ca.  What a cherished gift, Thank you so much!

Ports and Chemo Start

Wednesday morning we checked in El Camino Hospital at 11:30am and at 2:00 I was given a general anesthesia for the port procedure.  I received a Power Port under my left collarbone(IV) and a Bard port (IP) under the right ribcage/diaphragm area so that the tube will dump chemo directly into the peritoneal cavity.
The procedure was pretty uneventful except we didn't realize how the IP port would look and when we saw this bump, we thought I had an air bubble in my side and yelled for the nurse!!!  As I was getting released, I began feeling the affects of the air they pump in you for the laparoscopy to place the IP port.  I was told the gas pains will move all around, as far up as my shoulder, which they have done last night and this morning!  That isn't fun!
Day 1 Chemo was yesterday (Thursday) We arrived at PAMF Mt. View Infusion Center at 8:00am.  I tolerated all the drugs administered in the IV port without any nausea or allergic reactions.  It was actually very easy, except for the nagging gas pains.  Another funny reaction was when I saw the IV port in the mirror in the bathroom, I thought the chemo had dripped out onto my skin and burned it.  We had read that this can happen.  We rushed out of the bathroom to find my nurse Christina, and gave her a fright!  She said, No that's your incision from implanting the IV--they use glue to seal the incision!!  Well, we didn't know that!  It had been bandaged up!!!  So now we are learning all the angles of this adventure!  Chemo was completed and we left the Infusion Center at 1:00pm for home, which is my sister's house!  Thank you Debbie and David for opening your home to us and making us feel so welcomed.  Around 5:30, I started feeling warm.  I got up for the bathroom and when I returned, John and Debbie commented on how red my face was!  We called the Drs office and Dr. Pisani called back and prescribed Benedryl 50mg and Gas-Ex for the continuing gas pains.  My face is still red, but hopefully the gas pains will subside as the day goes on.  I managed about 4 hrs of sleep last night, then laid awake from 1:30-4:00am until hunger got me up!  At least I have an appetite!  Yes, I still crave pancakes, but doubt I could get John out to IHOP at 4am, so instead I settle for an english muffin with Skippy Crunchy chunk peanut butter and red raspberry preserves--this is so yummy!!  Good fat and protein in peanut butter, too!  It's a good internet hour, too, so I got some skype chats in with my best buddy Janis in Boston before they leave for France tomorrow.  So sad we can't go!!!  Next year, for sure!!  Great talking to Donna & Jerry s/v Bluejacket, while they were sailing the Albermarle Sound!
We arrived at the Infusion Center at 9:00am today to begin IP Chemo.  I have my own room for this chemo because they need to monitor my urine output to make sure my kidneys don't get damaged.  So they flush fluid through my system so they can monitor my intake and output.  Also, I will need to lay flat for most of the day to fill me up!
Fast forward, I am now home, comfortable on the couch, propped up so I can breathe as I am feeling about 4-5 months pregnant!  Between saline and chemo, John and Katie mathematically figured I had the equivalent of 13 beers!  And it's Friday the 13th and my favorite number is 3 and I am in the #3 Regimen of this Clinical Trial and I found out today that I am a Pioneer!  The first person to get IP chemo as it is being reintroduced in this trial to be approved by the FDA for ovarian cancer treatment!!  That feels pretty cool.  I got the best care today and my ports were working great!  The pictures show saline going in the IV port and the IP port accessed.  After all fluids were in, Katie flushed them with saline and heparin to keep them opened.
Then I got rolled on each side for 20 minutes to make sure the fluids could saturate and then it will take about 72 hours for it to exit completely, so it protects my kidneys.  Very cool.
Thanks for dropping by, have a great weekend everyone!  Thanks for the love & support!

A Day in the Sunshine

Yesterday John and I attended the Chemo Teach with Katie, my Oncology Research nurse at PAMF Mt View Center.  We received a binder FULL of information titled Patient Treatment Guide.  It's got answers to almost any question and a detailed calendar of my chemo schedule.  I am part of a Clinical Trial, so everything must be documented and followed per the Study.  When Katie made my calendar, she found that starting chemo next Tuesday would interfere with the week events before our daughter Jenn & Kyle's wedding August 20th, so she put in a request to the Study that I start this week.  It was approved, so that means, IV and IP ports implanted tomorrow, first day of chemo Thursday!!  I will have chemo days 1(Thurs), 2(Fri) and 8(Thurs) of each 3 week cycle, lasting 6 rounds, then 16 rounds of Avastin only.  I will share more of that stuff later as I get more familiar with it.  My other chemo drugs are Taxol and Cisplatin.
We had a tour of the Infusion Center -really modern and comfortable.  Next, was a quick trip to Dr. Chen's office behind El Camino Hospital for a follow up with his PA, Bella.  My wound is almost completely healed, only requiring a light gauze bandage.  She referred to it as a sore that lost it's scab too early!  I am good to go for ports and chemo.
This morning John and I babysat our great-nephew, Eli--he's 3 mos. today.  It's been fun watching him grow this past month and also spending time with his three siblings, Mia (9) Kai (5) and Noah (4).
After lunch John and I drove to Sawyer Camp Trail and did a VERY short walk to the first set of benches overlooking the reservoir.  I always loved walking the trail before we left to cruise.  The sun was shining and the fog was rolling over the Hwy 92 gap--it was so pretty.  Felt very normal-normal is good!
Thanks for keeping us in your prayers

Timeline of the New Year 2011

We have been loving the last four years cruising on our 38ft Lagoon Catamaran "Don't Look Back".  She has taken us up and down the entire Eastern coastline, the Bahamas for the last three winters and for the last year we have been in the Eastern Caribbean.  Although we have been on "vacations" off DLB, she has been our prime residence and we have loved it!
In early November we traveled up island from Grenada, West Indies, visiting many islands we had passed pre-hurricane season. We spent Christmas and New Years in St. Maarten with friends.  We made passage to St. Thomas USVI on January 3 to prepare for our son, Jonathan and his girlfriend, Emily's visit on Jan. 6th. We had a great week with the kids, sailing to St. Johns, USVI, then to Soper's Hole, and Bitter End, BVI.  John and Jonathan spent an afternoon sailing practice kites and we really enjoyed every minute of their visit.  A week after they left, we continued with our plans to head back to the Bahamas.  We enjoyed stops along the southern coast of Puerto Rico ending in Boqueron, PR.  We wanted one last meal at a favorite restaurant, La Marea.  Fate has it, we made friends with a boat broker at dinner and next thing we knew, we signed a three month contract to sell DLB while living aboard and decided to return to the USVI and cruise there!  We still laugh about our 300 mile side trip to Puerto Rico!  We turned around and enjoyed more areas of Puerto Rico, Vieques and Culebra en route to St. Thomas.  I had started back on the new Weight Watcher's program Jan. 11th and loved the results I was getting.
First business in St. Thomas was a doctors visit for my shoulder--it had frozen due to a fall I had taken in July in Grenada. I was pleased to find I had lost 10 pounds at my appt. Feb 2nd.   I began Physical Therapy for my shoulder and within a month it was greatly improved!!  We left St. Thomas for a sail to St. Johns to spend my 57th birthday!  What a wonderful week, circling the island, staying at different moorings in the National Park, snorkeling and relaxing in the sun.
We returned once again to our favorite anchorage, Brewer's Bay, in St. Thomas.  We had made good friends with local gals, Dorene and Susan.  They taught us how to Stand Up Paddle Board and we had been spending our Sundays paddling around the bay with them.  The following week, we sailed again to St. Johns for a crossing to St. Croix.  It was exciting to visit a new island, enjoy the great snorkeling and eat dinner at a Live Food Restaurant recommended by Dorene.
We started discussing hauling out DLB for hurricane season in the Virgins as opposed to sailing the 500 miles to Grenada.  We headed back to St. Johns and began calling various boatyards for rates.  Due to the width of our boat, the only possibility was Virgin Gorda Yacht Marine, in the British Virgin Islands. We decided to sail there to finalize our plans and made the round trip from St. Johns in one day.  Our reservations were made and we returned to St. Thomas.
What relief to know we could enjoy the next month in the Virgins as opposed to a long sail to Grenada just to haul out!  We planned to spend our summer months, May-July, in France at our friends Janis and Tom Henderson's home, where we had left our tandem bicycle two years ago. Our daughter Jenn is to be married in August and we would spend time in Calif. with families.   Everything was fallling into place perfectly!  Our last hurrah of this season was Chelsea's upcoming visit March 27th.
We spent Wed. March 23 entertaining our daughter Jenn's neighbor Danielle and her friend, Andrew.  Danielle was visiting Andrew and his girlfriend who had recently relocated in St. Thomas.  Along with a fellow cruiser John, the six of us spent the day sailing around Charlotte Amalie, Hassel Island and Water Cay.  We ended the sail with snorkeling in Persistence Bay.  Anchored back in Brewer's Bay, we enjoyed a happy hour with another boat before Andrew and Danielle left.  I was amazed how exhausted I felt at the end of the day but I also had talked so much!!
The last four days I had felt a low pelvic pain or ache!  Every morning I would say to John, "what is this stupid pain?"  It didn't take my breath away, it was just low and constant.  I decided it must be a bladder infection!  I had never had one, so this must be the way it feels.  I didn't want to be under the weather for Chelsea's visit, so I called and got an appointment that morning.  John dinghied me to shore and I took the safari bus into town.  I was familiar with the medical building because the nurse practitioner was in the same office I had my shoulder treated.
My urinalysis was normal.  My pelvic exam was not!  Judy felt a huge mass, possibly a fibroid on my right pelvic area.  She said I needed to go right downstairs to radiology for a sonogram.  I called John to say I would be later returning.  I went to Radiology and was told they could do it in the afternoon at 3:15--so I took myself out to lunch!  After the sonogram I was sent back upstairs to Judy.  One look at her face and I knew something was up.  The report showed a large right adnexal mass, highly suspicious for ovarian neoplasm, 11.9 x 8.5 x 7.1 cm.  My Mother died of ovarian cancer four years ago!!  YIKES!
Immediately, Judy arranged an appointment with a GYN the next day.  I took a taxi back to the boat-I just needed to be with John.  That evening we called my Internist in Calif.  She instructed us what to ask during the next days appt. and when John asked her what she would do if it were her, she said, "Come home, this is where your team is".  Friday we met with Dr. Rosser and after consultation and exam, he encouraged we see an Oncologist GYN for surgery and there wasn't one on island.  My weight was now down 20 pounds!  We left his office in a daze--only thing I knew for certain, I wanted a cheeseburger!  We had lunch at Shipwrecks and then started inquiring at marinas about leaving Don't Look Back.
My first phone call was to my sister, Debbie.  Bless her heart, she had been very sick with pneumonia.  I told her not to freak out, but that we needed to come home for surgery.  We then called my son, Ryan, and then Chelsea, to break the news that she needed to cancel her trip and we were coming home.  John called Jenn, Jonathan and his sisters.  We left a message for my GYN Dr. Hoff.  He was wonderful when he called-he could see me between surgeries the next Wed.  I flew home Sunday arriving at 2:00am Monday.  Chelsea picked me up and I spent the night with her.  My sister and I went to see Dr. Hoff on Wed., sharing with him a CD copy of my sonogram.  After exam, he called Dr. Chen, and was able to get me an appt. the next day.  Surgery was scheduled for the following Friday, April 8th, allowing John time to sail DLB to Puerto Rico and fly out of San Juan in time for surgery.  We always held out hope it was benign, but surgery proved it was ovarian cancer in both ovaries, half of the fallopian tubes and an area of the Omentum.  The great news is the appendix was clear and all lymph nodes negative.  I was in the hospital from April 8-12.  I was continually surrounded by John, my children, Ryan and Chelsea,  my sister Debbie, husband David, and family.  My friends have also been amazing.  I cannot get over the outpour of love and support--thank you so much!
On April 19 I had my sutures removed.  At this time an infection was found in the upper part of my incision.  I was started on Keflex.  The next week is a blur.  John had already booked multiple flights to return to Puerto Rico, leaving the next day, to move DLB to Virgin Gorda for haul out on April 29.
I have always been generally healthy.  This was my first experience with an infection that totally deflated me!  I am so thankful to Debbie, David and Chelsea for their constant care.  I also want to thank my Mason Lane neighbor, Pat, for wound care every other day.  Thank you.  My brother Bill & Kathy call me everyday!  John is my rock!
I was being considered for a clinical trial of IV vs IP Chemotherapy.  I have been approved by our insurance company and so far, I have had my baseline tests done and today, John and I will attend a Chemo Teach at PAMF Oncology in Mt View.  I am scheduled for IV(intravenous-into the vein) and IP (intraperitoneal-into the abdominal cavity) ports to be implanted on Wed. May 11 and if all goes well, chemo will begin on May 17.  I have now lost 25 pounds and for once in my life, I am told to gain weight!!  Whodda thunk??!!
My first Mother's Day home in 4 years--love my family!
This brings you up to date!  From now forward, we will post updates as they occur for your information.
I plan to kick cancers butt!  Keep posted for that update!!!!