Much better news than I thought!!

I had my CT scans today and met with my oncologist and although I have one confirmed new subcutaneous tumor and another existing tumor that has doubled in size, my chest and abdomen remain clear and the tumor next to my spine has not changed in size. This is very encouraging news as I was worried that with new tumors that I could feel, I might also have new tumors in internal areas as well.

However, my oncologists feels that we should not wait much longer to try immunotherapy: to begin it while I am still very healthy and able to tolerate the treatment. So at the end of January I will have a PET scan to definitively assess the existing tumors and an MRI of my brain and neck to make sure that there are no lesions there. In early February, I will begin Interleukin 2 which requires hospitalization during the week long treatments.

I am much relieved! As some of you know, I was expecting much worse. It is often hard to be continually optimistic in the face of this disease. All in all, this is great news to begin the new year!!

Golf on December 19th!!!

It is hard to believe but today dawned sunny and bright after weeks of very wet weather. Snow is predicted in the hills this evening but it was nice when I walked the dog this morning. So I went up to the country club and manage to slog through the mud and play the equivalent of 18 holes of golf (played 2 balls for 9 holes). Actually hit some pretty nice balls on some of the holes which really surprised me.

This has been a bad month for cars in our family. Both my daughter-in-law and my son-in-law were in car accidents in which their cars were totaled. Lori was bruised but OK, but Brian suffered a slight brain injury and needed not to do anything active or strenuous for a couple of weeks. I went up and babysat for Kai for the week. What fun!! but exhausting. I took Kai to the children's playroom at OMSI one morning and my legs felt like I had done 100 squats from getting up and down from all the little chairs!! Not to be left out, I took Dash to the children's museum at the Portland Zoo. He is now at an age where he really enjoys playing with the other kids so I could just watch and enjoy. Got home yesterday and slept 11 hours last night!!!!

Am a bit discouraged as I can feel another subcutaneous tumor and the one in my right thigh is getting much bigger. Will find out exactly where I stand when I have my scans on the 28th. However, I am sooo thankful that I have had these two months to recover from the BRAF drug and to be well enough to enjoy golf and babysitting.

Happy Holidays!!

As the lights on the last candles of Hanukkah burn down and the Christmas lights twinkle on all over the neighborhood, I want to take this opportunity to wish all of you a wonderful holiday season with family and friends. My holidays will be full with my kids and grandkids and my two sisters as well several gatherings of friends. I also look forward to some quiet time at the beach for long walks and reflection about my life over the last year and the challenges in the years ahead.

I will probably not post much until I have my scans and meet with my oncologist on the 29th. I will know then whether I am holding my own or will need to start another course of therapy (an immune enhancing on this time). Please keep your positive thoughts and cares coming my way.

In this season of giving, please consider (thank you if you haven't done so already) making a contribution to the Melanoma Research Foundation at . http://www.firstgiving.com/mollybloomfield.

GO BEAVS!!!

Well today is a very big day in Corvallis and Oregon. The Oregon Ducks are playing the OSU Beavers in the annual civil war game. But there is much more at stake than the inter university rivalry. If the Ducks win, they will play in the national championship game. Needless to say the town is rocking. I am going to stay warm and watch the game on TV.

I had a marvelous Thanksgiving in the Bay Area with three generations of Bloomfields. There were 15 of us at the table for most meals all week as we rotated between homes. I came home exhausted but feeling like it was a very special time.

I am feeling so good. I have to pinch myself. My face is finally healing up from the ravages of the drug and the cancer surgery. I am able to sleep and eat well and each day have a little more energy. I feel so blessed to be able to have this time and am savoring each moment.

With the holidays upon us, I am going to stay pretty close to home with celebrations and time for friends and family in Corvallis, on the coast and in Portland.

For now I will be posting about once a week, unless I get some really cute photos of the kids from Thanksgiving.

Happy Thanksgiving!!

Believe it or not, Sophie and I see turkeys like this on our walks around my neighborhood. There are several flocks of wild turkeys that wander in this area. Sophie isn't sure just what they are when she sees them.

I hope that you and your family, where ever they are, have a wonderful Thanksgiving holiday. The experiences of the last few months have made me realize how much of our lives we take for granted. I am so thankful for my family, friends and renewed health.

Thank you to each one of you who have supported me with your thoughts, prayers, gifts of food, time and dog walking. Please know that I cherish each one of you and so appreciate all that you have done for me.

Glorious Rainbow

When I took Sophie out for a walk this morning, there was a beautiful full rainbow across the sky which lasted for over 15 minutes. It represents the joy I feel for being fully healthy again and the optimism for my future. Yesterday I listened to a webinar about the immune-enhancing drugs that are being developed for treating melanoma. I have always felt that it has been my immune system that has held off the melanoma cells and these drugs will just help me do that in the future.

May your day be wonderful and full of rainbows!!

Blessings

Hello all you faithful readers. Thanks so much for continuing to check in.

I can't express how grateful I am to wake up in the morning with energy and no pain. I am truly back on my feet again: out and about, seeing friends, walking Sophie, and playing golf and pickleball. My face surgeries are healing up well. The sebaceous cysts on my face and body (this is a totally new side effect for the books according to the oncologist) continue to spread but they don't itch or hurt...they are mostly cosmetic...I can just think of it as being a teenager again with a bad case of acne!

My biggest problem right now is pacing myself. There is such a desire to do everything since I have no idea how long this is going to last and I risk exhausting myself and ending up compromising my immune system. So I am working very hard on being in the moment and in making sure that I have time each day to rest and meditate.

Magnificent Fall Day

What a blessing to have days like today...60 degrees, sunny, and gorgeous colored trees. I am feeling stronger each day. I am playing golf every nice day I can as I know they are numbered. We are supposed to have a very rainy November.

Election day....Thank goodness..no more campaign ads! I pray that we can find a way to be more civil in our election process and have elected officials that can work together for the people of this country. I think that the politicians all should follow the teachings of Pema Chodron and approach each new issue with an open mind and loving kindness both toward themselves and others....

Best News I Could Hope For!!

Some of the personal advice that Pema Chodron gave me last weekend was "Don't escalate!" She meant not to spin scenarios in your head worrying about what might be or happen. She promotes living in the moment and approaching each experience with an open mind and kind heart. Well, I certainly had to practice that since my scans of last Friday and her advice proved so true.

Becca and I saw my oncologist today and he seemed rather subdued when he came to see us so Becca and I expected bad news. But what he wanted to advise us to do was just what I wanted. My melanoma seems to be stabilized...no new tumors and the ones that remain don't seem to be growing very fast. My blood tests also showed that my liver and pancreas have fully recovered. So he wanted to just to hold off on any more treatment , to let my body recover, and to rescan in two months. Terrific plan as far as I am concerned!!!

No photos please

Made it through the Mohs surgery today on my nose and lip. The worst part was the administering of the anesthetic. My body cleared it so fast that they had to keep giving me more and more and that was very painful. Only had to have two rounds to get everything and no skin grafts so that was good. I hurt like heck from all the needle pricks right after we got home but now the pain is down to a manageable dull roar. Kai is now terrified of her granny in her funny bandages and won't let me near her.

Tomorrow I meet with the oncologist to find out the results of the PET/CT scans and to plan any future treatments.

Hard to Believe

Well, two weeks ago, I would never imagined it would be possible for me to get back on the golf course. BUT the rains held off today and I went out with my friend Patty and played 9 holes. I was amazed that after three month and as sick as I was, that I could hit the ball well. Didn't keep score but had some lovely shots and scored a 6 after 5 good shots on a long par 5. I was very tired when I was through but what a boost to my morale! May pay for it tomorrow but it was well worth it.

Still sorting through all I learned and the emotions from last weekend. Will be a work in process as I integrate Pema's teachings into my life.

SMILE at Fear: A Life-affirming Weekend

Ten years ago when I was so ill and my husband, Stefan, was diagnosed with terminal cancer, my sister-in-law, Laura, send me the book When Things Fall Apart by Pema Chodron. In the 1970s, I had dabbled with Buddhist and Zen teachings and meditation practices and found the teachings very foreign and the meditation practices difficult to do. So I decided that was not for me.

Pema's writings changed all that because she has the gift of translating obscure Buddhist teachings into everyday western English.Since that time, I have read most of her others books. In addition to When Things Fall Apart, my favorites are Start Where You Are, The Places that Scare You, and Comfortable with Uncertainty. I need to add to the list her newest book: Taking the Leap: Freeing Ourselves from Old Habits and Fears (which may be her best in terms of practical advice that you can do everyday). (Side note: Pema was born Diedre Blumfield-Brown)

My friend Phyllis Lefohn (who lives in Montana and is a Quigong teacher) and I have talked again and again of going to one of Pema's retreats at her Gampo Abbey in Nova Scotia, but we just couldn't find a time to make it happen. From many things that have happened to me and for me in the last few years, I am certainly beginning to believe that things happen for a reason if you are open and present in the moment. Last April, I opened a Shambala magazine that a friend had given me in a stack of magazines that she had finished, and there was an ad for a meditation weekend with Pema Chodron in Richmond California. I called Phyl immediately to say that I was going to go and could she join me. It just so happened that she had a wedding in San Francisco the week before and she said "Yes". I signed us up immediately. Good thing I did as it was sold out in one week with 3,000 people attending (and another 2,000 from all over the world listening online).

When I was on the BRAF drug and so sick, I didn't think that there was any way that I was going to be able to make the weekend. But with help from the organizers of the conference in arranging for special seating and access, I was able to participate in the entire weekend. The organizers of the weekend (all volunteers) did the best they could with the venue and number of attendees and there were parts of the workshop that didn't work well. BUT the times with Pema were magical.

I could spend pages telling you what I learned and how putting these tools into practice will make such a difference in how I live whatever life I have remaining. The theme of the workshop was SMILE at Fear. Pema acknowledges that fearlessness is a lofty goal, but the starting point is getting to know our fears. Fears cause us to shut down, to run away, to begin harmful habits, or to spin imagined, and often exaggerated, story lines of future occurrences. This workshop presented techniques that allow one to stay present when things trigger fear in us, and to touch the fear instead of running from it. Pema discussed ways to approach situations with no predetermined or fixed ideas but with curiosity, interest, and an open mind. Most of all, she advocates living a genuine life filled with unconditional friendship and kindness toward oneself and others.

I hope those of you who want to know more will contact me and we can have lunch or tea or can chat over email. If you would like to experience everything that Pema said, DVDs and CDs of all her talks at the workshop are being produced and are going to be available to order after Nov 1 at www.pemachodrontapes.com.

LOVE WHAT IS...

Getting in the Halloween Spirit

Just a quick note to let you all know that the first of my three surgeries for squamous cell carcinoma went well. They took a fairly large chunk out of my left arm, but luckily it doesn't hurt very much and neither grandchild bumped into it while I was there.

After the surgery on Monday, I was able to spent a wonderful day with my son Jon (who had the day off from work) and his son Dash. We went to the zoo where Dash was more interested in stomping in puddles, putting things through holes and playing in the sandbox than seeing the animals. We did get the treat of being right at the tiger cage when they were roaring....Quite impressive. Jon and I had two hours just to sit on the porch and talk while Dash was sleeping. It was such a rare treat to have Jon to myself and our conversation was deep and meaningful. I spent some time showing Jon my meditation practice as he wants to incorporate meditation into his daily practice.

Saw my oncologist who was very positive in his support of my decision to stop the drug. Had to have lots of blood test to see if my liver is improving and to eliminate pancreatitis. We put together a plan for the months ahead that I am very comfortable with.

Each day I am getting a little stronger. I have been reading some books by Sylvia Bornstein and loved this quote from her: One reality I can create---the point of view that I bring to every experience.

Not to Worry...

Just wanted to let everyone know that my posts for the next few weeks may be spotty, but that does not mean that I have taken a turn for the worst (I or my kids will certainly let you know that). I just may not have time to get to a computer to make a post...but I will try and share my experiences with you

Miracles do happen...

It seems like a miracle to feel more like myself again. What a forceful reminder to appreciate the everyday things like having enough energy to get out of bed or to talk with a friend or enjoying the taste of a good cup of coffee. I know I am getting better because I can drink coffee again! I am feeling a bit stronger each day. My face is still a mess but the rest of my skin seems to be recovering and my bones are not aching as much. Now I need to start building up my stamina again.

Have a lovely weekend, everyone!!

(The photo was taken by Stefan in our backyard)

Feeling Better - YEA!!!

Hi all!! So sorry I haven't posted in a few days. I was away for the weekend with four long-time friends in my women in science supper group. Each fall a many of us that can go to SunRiver Resort near Bend to Ann Brodie's house. We spend two days eating great food and hiking in the mountains. I couldn't hike this year, but did go and enjoy the wonderful company, laughter, and great food. While the others were hiking, I slept or read on the deck. Found it exhausting but very good for my morale.

I am happy to say that I am feeling a little less fatigued each day. I am hoping that in the coming weeks that I will get enough strength back that I can resume most of my usual activities.

I now have my surgeries all scheduled for the month of October. They will do my arm next Monday and the two on my face the end of the month.

I was really worried that I was not going to be well enough to go to the Pema Chodron retreat on Oct 16 and 17 but now it looks like I will be able to go and to enjoy the workshop.

Poster Child for side effects of BRAF

Well, I am fast becoming the Queen of side effects of BRAF. I now believe I have had every side effects listed and not just mild effects but ones that have really affected my quality of life. The latest is that the results of last week's biopsies are back and three out of the five showed squamous cell carcinomas that require more surgery. So I am now scheduled for two more surgeries in the next month. The worry is that other spots on my body that we are watching may also turn out to require more surgeries as well.

So that news was the last straw for me and I decided to stop the drug as of last night. My oncologist and I will meet in two weeks and put together a plan. Right now I am going to concentrate on getting my strength and hope that my liver, skin, and joints improve and are restored to where they were before the trial

Interesting science behind the drug I am on

For those of you not interested in things chemical and biological...I suggest you skip this entry.

One of the amazing developments over the last 20 years in biology is our understanding of genes and DNA and our ability to easily sequence the DNA of genes. In the late 1960s, I was doing research with Dr. Jack Remington, a world expert on toxoplasma gondii at Stanford and it took us months just to separate the DNA in different strains. Researchers were just beginning to discover that a change of one amino acid in a protein (caused by a mutation in a gene) could make the difference between a normal person and a person with sickle cell anemia or a normal child and a severely retarded one with PKU.

Fast forward to today, using sequencing techniques, scientists are discovering that some cancer cells can be characterized by genes that have mutated and don't work properly and cause the cell to divide prolifically. Discovering drugs that can attack the products of these mutated genes and stop the cells from dividing are leading to treatments that cure or hold some cancers in check.

For example, chronic myelogenous leukemia (CML) is caused by a single genetic change that makes a gene keep producing a specific enzyme, a kinase, that after a cascade of chemical reactions, causes the cells to continue to divide. A drug called "Gleevec" has been developed that binds to the kinase. People take Gleevec for their lives and their CML doesn't return. In about 5% of the CML cases, the cells become resistant to Gleevec, but scientists have discovered why and have developed two other drugs that work to block the kinase when this happens.

So what about melanoma? In the last 20 years, there have been no therapeutic advances in its treatment and half of the patients with metastatic melanoma die within 6 months. Scientists have discovered that half of the people with melanoma have a mutation in the BRAF gene in their tumor cells. The drug that I am on, a BRAF inhibitor, targets the product of that mutation. In Stage I and II trials, tumors shrank in 80% of the cases (mine have shrunk). Unfortunately most of the patients relapsed within a year. (The hope for me is if I relapse to where I was before the trial, I will have random tumors that can be treated with radiation or that my own immune system can respond with the help of some of the new immune enhancing drugs. )

The thinking is that the melanoma cells became resistant to the drug by keeping the drug from binding to BRAF or by switching to a different driver mutation. Research is very actively trying to develop back-up drugs. There is one trial going with a BRAF inhibitor and one that targets the back-up pathway.

So you can see that research is at a critical stage right now. I just need to hold on for two or three more years!!

(PS. Donations to the Melanoma Research Foundation at my website ( http://www.firstgiving.com/mollybloomfield) have reached 25% of my goal of $5000 by the Holidays)

Did too much over the weekend but it was great for my psyche!

Yesterday, Lynda and I went with Linda Humphrey to her home and a local winery to see an exhibit of her oils and water colors. It is such a treat to look at art with the such an accomplished artist to hear how she was able to accomplish the beauty on the canvas. I am seriously contemplating buying one of her works (if I can find a wall to put it on). It has such gorgeous light filtering through the trees on some beautiful flowers.

It was the day of our monthly golf scramble and I was so jealous that I couldn't play but I did heat up the lasagna and went to dinner. It was such fun to see everyone and catch up but I was blitzed by the end of the evening.

I am so fortunate to have a woman in town who is very experienced in edema massage. I got in to see her today and she worked on my face and greatly reduced the swelling and discomfort in my face. Thank you, thank you Piper.

Good News and Bad News

Wonderful news...this doctor visit with Dr. Lufkin confirms that he is a caring, empathetic physician who values his patients as partners in their health care decisions and who has his patients best interests in mind.

Good new...I have no new tumors in the parts of my body that they scanned and the tumors that they were following have either haven't increased in size, have decreased in size and have disappeared.

Bad news....the side effects of this drug continue to compromise my health and decrease my quality of life. My liver functions has been compromised by the drug. I am now in the dangerous zone yet but could soon be.

Difficult decisions to be made. Dr. Lufkin , Rebecca and I discussed many options for me and decided that I would continue on the drug for another 3 weeks but may stop if further blood test show that the liver function is worse or if the fatigue, joint pain and skin growths get any worse.

By the time I got home yesterday evening, I was more than exhausted. Had a little soup and went to bed.

Felt enough better this morning to got to breakfast with SueAnn and then spend an hour on a lovely morning wandering around the booths at the Fall Festival. Bought presents for the grand kids and a carved stone and metal sculpture for the yard and a lovely bonsai for my window sill. Only lasted a little over an hour and came home.

It is hard to be inside on such a lovely fall afternoon but luckily there are some very good football games on. Going to stay home and root for the Beavers on the blue turf against Boise State.

GO BEAVS!!

Be happy for a port

Well, it only took two nurses to find a vein with blood this morning. Luckily we were able to leave the IV in for the blood test tomorrow.

Did have some fun dinosaur play time with Dash last night. Thought you might like to see a photo of my grown up two-year-old.

No photos....PLEASE

Saw the dermatologist yesterday and he did a job on me....5 biopsies...three on my face so I am not a pretty picture with all the band aids, etc. Dash was even a bit afraid of me when he got home yesterday until he figured out that Granny was really behind that face.

Lots of nausea and fatigue today so didn't feel much like doing stuff with the grand kids....darn

Off to Portland for Dr visits and scans

I leave tomorrow for Portland to visit the dermatologist (Skin growths and squamous cell cancers are side effects of the drug....) and the oncologist. I will have my first CT scans after being on the drug for two months. Keep your fingers crossed that the results are positive!!!

Should have a great few days with grandchildren as well. May not get a post up until Friday but will be sure to let everyone know the results after I visit the oncologist on Friday.

Really missing being on the golf course in Bend with all the gals from the country club, but I know that it was the best decision for me not to go along on the trip.

Susan Komen Walk for the Cure

In past years, my friend SueAnn and I have joined the 45,000+ that participate each year in Portland. It is a really inspirational event. The last few years we have joined Becca's sister-in-law's team who walk in memory of Sarah's mother. Sorry to have to miss it this year, but my grand daugher, Kai has taken my place in style!!!

May you be inscribed for a good Year

Last night was Kol Nidre, the holiest evening of the Jewish Year..a time of reflection on the year past and of the year ahead. One of the lasting gifts that Stefan left to this community was a Kol Nidre service of beautiful music arranged for amateur choir. Joan Caldwell and members of the Beit Am choir (many who are not Jewish) have kept this tradition alive for the six years since Stefan's death. I was so glad that I felt good enough to attend the service and listen to melodies again.

Stefan loved music and our lives together was filled with music of all kinds. I know that his retirement years would have been filled with music arranging and composition and his new-found avocation of choral directing. Because of this I have established an endowed scholarship in music and choral directing at OSU in Stefan's name.

Stefan...Red...I miss you both terribly but wouldn't have traded our wonderful times together for anything....

HAPPY BIRTHDAY, RED

This is a day for thinking about the two very special men I have had in my life.

Today would have been Red's 87th birthday. When you were with him, you would never had known his age..he had such a lust for life. Although we had only five years together, they were filled with love, laughter, coffee and crossword puzzles in bed, golf, and adventures (to places and experiences that each introduced to the other). Through Red, I became part of a wonderful extended family..that introduced me to Portuguese bean soup, Marsala's, killer mint juleps and martinis, and even driving a team of Clydesdales!!!

Please think about making a donation

I have established a donation website for the Melanoma Research Foundation (http://www.firstgiving.com/mollybloomfield). I am hoping to raise $5,000 by Christmas toward research on drugs similar to the one I am on (but more targeted and with fewer side effects). No matter the occasion, please consider making a donation in my name.

Thank you. I am confident that the money will help save someone's life in the future.

Sorry about not posting for a few days

Thanks for the feedback that you all get worried when I don't post every day or so. That means so much to me that you are all keeping up with what is going on here.

The answer is not much...it is just one day at a time and every time I think I am getting better, I have a day where I am so tired and hurt so much I can't get out of bed. It is hard not to get depressed. It has been cloudy and rainy the last two days which hasn't helped either. I am so grateful to have a superb acupuncturist and lymph massage therapist that are making a huge difference when my body is having so much trouble coping with the drug.

Becca, Brian and Kai were here for a few hours yesterday on the way to the coast. I couldn't do much more than sit on the couch and watch but just watching Kai explore..both with her actions and her new vocabulary buoyed my spirits.

I am finding that some afternoons all I feel like doing is vegging in front of the TV. Now that the US Open Tennis Tournament is over, I am desperate for ideas of what to watch. Do any of you have TV series that I can watch on DVD from Netflix that you would recommend? I just finished the #1 Ladies Detective Society first season. I loved them and am very disappointed there aren't any more.

Spectacular beauty

My friend SueAnn took me to the coast house for two days. The weather was beautiful...sunny, warm, and no wind. I even had the energy for two long walks on the beach on Friday night and Saturday morning. But most beautiful of all was the amazing star-filled sky last night (no moon and very little ambient light so the heavens were glorious).

Weekend has ended on a down note as my joint aches have increased all day with chills and a slight fever. Hopefully getting to bed early with a soak in the tub is just what I need.

Lastest in golf and beach walking attire!!!

It is a good thing that I am not vain or have put out a lot of money for cosmetic surgery as I am afraid that my droopy, lumpy face may become permanent..or at least for as long as I am on this drug...and I will have to wear such stylish attire whenever I am outside during the day!!!

L'Shanah Tovah

Had a wonderful Rosh Hashanah meal with dear longtime friends: Ken and Paula Krane, Pat and Irma Canan, Sue and Howard Korn, and Lita Schecter. Missed having the kids with us as this has been a tradition for the Kranes and us for many, many years. Too tired to go to services but was there in spirit. Sending wishes to you all for a healthy and happy year ahead.

Thursday was the Jack and Jill tournament at the Country Club. Because it was cloudy and sprinkling, I went and was the ghost player for the team. I did the chipping and putting on every hole and even though we didn't win, the team had a great time. I was blitzed by the time lunch was over, but I am really glad that I did it. My outfit was something else to keep the sun off. Too bad I didn't get a photo.

Side effects seem to yo-yo. Joint pain is better but rash is increasing. This may be the pattern as long as I am on the drug. I will be happy when the research docs get together and discuss the effects of the drug on their patients and what they have found helps them.

Patience.....

It is hard not to get discouraged...Yesterday afternoon I thought the joint pain was better (and I didn't do anything foolish like play pickleball...) just stayed home and watched tennis. But this morning the pain is much worse. I keep hoping that I will get over a hump and the body will get use to this drug so that the rash, pain and fatigue can be come background noise rather than all consuming as it is at the moment.

My wonderful friends, Judy, Georgia, and Rosemary, came over yesterday afternoon for some bridge and they bought dinner. We barbecued hamburgers and it was actually nice enough to eat outside.

Thank goodness for the US Open tennis or I think that I would be going stir crazy this week.

Rash better..joints not

From one side effect to another. I am hopeful that this joint pain will also be temporary as I am having trouble with simple things such as getting out of bed, opening containers, getting a shirt over my head, walking, etc.

I did make myself go out with the dog this morning and slowly walk around the block and the pain in my feet and legs felt better when I got home. So maybe using the joints helps loosen them up and lessen the pain.

But I must admit that I am having trouble not getting discouraged. I want so for this drug to work and for the side effects to be manageable enough that I can enjoy life activities.

Got to remember to "Manage gracefully!!!"

Did too much yesterday..

Well, I am paying for yesterday. I could barely get out of bed this morning because of the bone and joint pain. My dear friend SueAnn came over and made me breakfast, walked Sophie and helped me with some chores.

Going to be a good girl and stay really quiet today. I am going to go over to a friend's and watch the first OSU football game. That will be a good distraction

Darn...thought I had escaped

Well, it is day 7 on the lower dosage of the BRAF inhibitor and I was feeling pretty smug about how the side effects on this level weren't too bad....

Seems like I didn't wait long enough. My face is flushed and breaking out again and I have new rash on my chest. And my joints have started hurting...

In spite of all that, I went over to the Athletic Club today and played three games of pickleball. BOY did that do my psyche good!!! I was a little slow and it really wore me out but if I can do that once or twice and week and not pay for it too badly, then that will be such a postive thing for me.

Decided to stay home and out of the holiday traffic this weekend. Am going over to a friends to watch OSU's first football game tomorrow. Monday friends are bringing food and we are going to play bridge and have a barbeque. Should be a good weekend!!

Thought for the weekend..."it is the style with which we pass the time that matters"

Looong Doctors' Appointment

Back home after two days in Portland for my three week appointment with the research doctors. It was 5+ hours mainly caused by the fact that it took three very experienced nurses to find a vein from which they could draw blood. We all decided that it would be a good thing if I got a port so that surgery is scheduled for October.

I seem to be holding my own on the lower dosage of the drug. Funny thing is that on the higher dosage, the rash and swelling involved most of my body except for my lower legs. Now after being off the drug for a week and then starting on the lower dosage, my lower legs are swollen and totally covered with rash but the rest of my body only has a mild rash. Strange...

Decided that my mantra for now should be "Manage gracefully!"

Wonderful Weekend at Coast

Back from the coast after a wonderful weekend there. Friday I felt the best that I had in weeks. But Friday night I started the drug again on a lower dosage and my energy level really fell on Saturday. Didn't matter as Sophie and I got out on the beach for an walk early on Saturday morning and then I just spent the day in my easy chair, reading, napping and watching the ocean.

Saturday would have been Stefan and my 44 wedding anniversary. His presence is so at the beach so it was nice to be there and have dinner with his brother Richard and his wife and my friend (of 35 years) Ione. We told stories and shared remembrances of Stefan which was very nice.

Came home Sunday afternoon. The rash seems to be stable for the moment and other than the fatigue, I am doing OK. I head up to Portland today and do blood tests and see doctors tomorrow. We will see what they have to say.

Starting up again

Slept last night without the help of a sleeping pill and feel almost myself this morning. Energy is coming back and the itching is tolerable...my head is bad but a friend came up with the idea of putting the cream on my scalp at night and wearing one of those head wraps that people wear to keep their hairdos from smashing. So I am off to the beauty supply store to see what I can find.

Had a long talk with the research nurse this morning and the FDA requires that I go back on the drug at a slightly reduced specified level to stay on the study. So I start again tonight at 720 mg/twice a day. However, if my rash flares up then I am to stop the drug immediately. I can live with that.

I am off to the coast with a friend. I always find my coast house to be such a healing environment even if I can't go to the beach except after the sun is down. Wishing everyone an enjoyable last weekend of August. Hope the weather is gorgeous where you are and that you can get out and have some fun!

Being home feels good

My brother and sister-in- law brought me home on Tuesday afternoon and it really feels good to be in my own bed and own space. Sophie was soo glad to have me home.

I am feeling a little bit better each day and can see more patches of normal skin. Still itching and hurting and having trouble sleeping, but the joint pain is down so that I can enjoy walking. I have been taking Sophie to the park at 6:30 am to throw the ball and it is soo nice to be outside. Have to hibernate inside the rest of the day, especially since it has been in the 90's here. One good thing is that I am not nauseous any more and can enjoy eating a little. I still tire very easily and so am trying to limit visits in time and number.

Huge thanks to Kay Enbom who is organizing my help email lists. She and I will work out a schedule of needs and she will email those on the lists to solicit volunteers. Please don't worry if you are not used now. I am sure my needs will continue in the months to come and I don't want anyone to do too much or feel left out. A BIG thank you to all who have volunteered.

I feel good enough today to try my hand at a little bridge this afternoon. I have been playing on line but it will be nice to see real people and to socialize a little.

Look who was happy to see me come home!!

One step forward and two steps back

Well, my feeling better was quite short-lived. Guess I tried to do too much and it really put me back. I felt horrible last night and hurt and itched all over. A little better today but still feeling crummy. It is hard not to get terribly depressed when the drug that hopefully will extend my life makes me feel so horrible and takes away my ability to do much or anything. I still expect to be home this afternoon about 4.

Spent some time with Dash this morning before going back to bed. We were singing Frere Jacques in the photo.

The HELP I will need in the next week is walking Sophie on Wednesday and Thursday afternoons and a ride to Portland on Monday afternoon (Aug 30) and a ride home on Tuesday afternoon (Aug 31) next week. Please email me if you can help. I also would like a volunteer who would be willing to be my coordinator for dog walking and rides to Portland.

My playmate for the afternoon

Almost human again

Today is day 5 off of the drug and I am feeling almost human again. Woke up early and took a walk before the sun came out and that felt really good. Over did it by then walking with my granddaughter and brother-in-law up to the coffee shop for a bagel and coffee. I went back to bed only to get a call from the dermatologist that they could work me in..in 15 minutes!!

The dermatologist said the rash was what they were seeing with this BRAF inhibitor just more extensive and the lesions popping up all over were not squamous cell carcinomas (YEA!) but we think he said they were keratocanthomas (???). He biopsied three of them. If that is what they are, they are benign but often a lot of them crop up on this drug. I sure won't win any beauty contests but then again if this stops the spread of the melanoma, I will still be alive!!!

Next we saw the study nurse who was relieved that the rash is toning down and less itchy and sore. It is something I am going to have to live with at a more moderate level if I stay on the drug. We agreed that I was not at the moderate level yet so I will call and report my progress on Friday when he hopes that I can restart the drug at a lower dosage.

This means that I can head back to Corvallis tomorrow and don't have to go back to the doctors office again until next Tuesday when I am scheduled for blood tests, EKGs, and various doctors visits. I am really looking forward to being home and back in my own bed.

However, it does look like my days of playing golf are over for a while unless I play before 9 am and after 6 pm. The extreme sun sensitivity is not something that goes away or gets better.

Nice to get out and about

I did feel good enough to go and sit in the shade at the kids' street party. It was fun to see all the little ones crayoning on the sidewalk and throwing water balloons (think the Dads had more fun with those than the kids)

This morning Jon convinced me to walk with him and Dash to the coffee shop up the street before the sun came out for a bagel and coffee. I made it but now am ready to go back to bed for a nap.

Day three and counting

Becca says that the rash looks better today. It is hard for me to say as it is now covering my lower arms and legs...essentially my whole body. Sort of feels like I am covered with small blisterss. And now by joints ache so it is hard to walk or get around.

Still looking for the silver lining...this experience sure is helping with my Buddhist practice of not running away from pain and fear. Doctors don't seem to know anything to do but wait until my system clears itself of the drug and hopefully the rash, etc goies away

Today the kids' street has their annual block party...Hope that I feel up to going for a little while.
If you know any fun movies I should rent to occupy my mind...send your suggestions my way!

Speckled lobster

Thank goodness for ambien and a decent night sleep. Am a little better this morning. Still look like a speckled lobster but am itching less and hurting a little more. Don't feel like doing much except watching movies or listening to books on tape. Even a littletime wih grandchildren wears me out.

Nothing like being a guinea pig

Looks like I will be in Portland for a while. Came up to see the doctors today and they were amazed at the extent of my rash and skin growths. Guess it is one of the worse that they have seen. So i am off the drug for the time being and we are all hoping that the rash will get better. We are all also very hopeful that this means that the drug is working. As the doctor admitted that as bad as it is, it is better than being absolutely miserable on the chemo drug with very little hope of getting better!

I have to go to the dermatologist on Monday to have the growth's taken off (there are many of them so don't know how many he will do then or if I will have to come back several times)

Will save you the horror of seeing a photo of me right now...not pretty. We'll keep you posted on how things progress.

BRAF...here we go!

On Monday August 9th, I found out that I had been randomized into the experimental group and would be getting the BRAF inhibitor (RO5185426), 960 mg twice a day. I was very excited because in the Stage I and Stage II studies, very positive results and remissions had occurred.

If you are interested in reading more about this type of melanoma therapy go to the BRAF gene description in wikipedia.

So I began taking the pills on August 9 and within the first week, I realize that I was fast becomming the poster child for all the worse side effects: loss of appetite, nausea, fatigue, rash, sunburn, joint pain and tinligh and burning of face, hands and feet. Most people in the stageI or II trials had just one of two of those side effects...not them all.

So after 11 days on the drug, I am heading up to Portland to see the doctors and see what they can do to relieve me from some of this. This certainly has had a huge impact on my quality of life. So hopefully they will be able to reduce the dosage or something to help with the side effects.

Thanks Goodness for Adorable Grand Children

My optimism was dashed on June 29, 2010 when the PET/CT scans showed metastases in the cirvical spine, right lower lung and right flank. Two of these metastases are not easily removed with surgery and I was now in the next phase of Stage IV melanoma. What a bleak few days I had as I absorbed the news and tried to find some equilibrium again.

Thank goodness for my grand children (Dash- age 2 and Kai -age 18 months) and my dear children and their spouses. We all gathered for the 4th of July at our vacation home on the Oregon coast for three days of laughs and Granny support.

Thanks goodness also for three dear friends, Lynda, Karla, and Judy, who accomplanied me on a 6-day golfing and sightseeing adventure around NW Oregon and Washington. We laughed so much that I stored up enough endorphins to last me through the anxioius weeks of waiting to see if I qualify for a Stage III trial of a BRAF inhibitor.

Finally found out today - August 3 (have been waiting since July 6th) that I have the mutation and now must pass the the other clinical tests to see if I qualify for the trial. Then I have a 50% chance of getting the drug. If I end up as a control, I will be on dicarbazine. We shall see.....

The Roller Coaster of Winter 2010

This was a difficult winter for me. My wonderful partner Red died of metastasized prostate cancer on February 13th. The last conscious thing that he did was to order a dozen roses for me for Valentine's day and insist that his daughter make a celebratory dinner of crab for everyone. I miss him terribly.

Right after the funeral, I returned to OHSU to have aother metastasis removed from my left knee.

The March PET/CT scans showed no new tumors and decreased activity in those noted before. We were elated that perhaps the Leukine therapy was preventing metastasis to organs but not to subcutaneous tissue. I was beginning to find myself again and decided to go to Spain and Portugal with my sister and her husband. It was a fabulous trip...everything was perfect..the weather, the food, the sightseeing, the interactions!!! I returned feeling really upbeat about my future. I was so hopeful that my regime of meditation, diet, exercise, and Leukine therapy was really helping my body to fend off the melanoma metastases