Progression Of An Aggresive Glioblastoma Brain Tumor

I'm backing up a few weeks from my last post. On September 30th Mom had a biopsy of her tumor in Seattle. She came through the surgery well and we were able to bring her back to her home on October 2nd. We were holding on to hope that her tumor pathology would show that it was lymphoma - a potentially treatable cancer - but we had to wait for a week for the results. What we didn't imagine was that Mom would decline so quickly over the next two days that when Mom was hospitalized on October 4th, she was sleeping close to 20 hours a day. Her decline was alarming so my dad and Mark took her to the emergency room, where they preformed another CAT scan and admitted her. She received IV steroids and Manitol, sodium/potassium to help her body pull fluid back in to her vascular system and relieve the pressure in her head. This gave us 6 wonderful days with Mom. She was vibrant and talkative. Cheerfully posing for pictures and welcoming the many family members and friends that visited her that week. When I left on Saturday morning, I knew that we were enjoying borrowed time. The steroids were making her unnaturally energized and it could not be sustained forever. When I arrived back in Kalispell 4 days later, the change in Mom was dramatic. She smiled and welcomed John and I but her eyes spoke of her exhaustion and growing limits of her ability to express herself in words. I noticed her right hand cramping up and a slight slur in her words. During physical therapy, Mary Ann asked her the color of each plastic cone, She could not verbalize any. When she was asked to grab a cone with her left hand, she did well, she was then to transfer the cone to her right hand and stack each one. This was not possible for Mom to do on her own. We knew of her right hand side neglect, or brain caused blindness. This was part of the problem. She walked back to her room with a walker and did quite well. Moved at a pretty good pace. The following day during physical therapy her right leg would not follow her brain’s direction to move. Dad noticed that if she looked at her right foot that she could move it. As we helped her move forward using parallel boards to hold on to, she was not able to release her right had upon direction of the therapist. I had to pull it off and move it forward with each step. She still had a very strong grip. She tried so hard! Her concentration/confusion on Mary Ann’s orders was heartbreaking. She wanted so badly to do well and please Mary Ann.

Musings From A Broken Heart

I believe that crying makes room for positive thoughts. And, that animals detect illness in the people they love. I'm writing this through tears, bleary eyed, in the middle of our family nightmare.
I think that Punkin knew what was wrong. Mom and Dad's beloved dog, Punkin, staked his territory on Mom's lap any time she sat down. And he stayed with her, sniffing her breath when she spoke, not wanting to leave her side. I remember Dad commenting on his behavior in early September.
At that time, we as a family were reeling. Mom seemed to have lost her short term memory. A couple of weeks earlier, her visit to the emergency room at Kalispell Regional Hospital, via ambulance, took us all by surprise. Symptoms of stroke alarmed a chiropractor, who sent mom to a clinic. A high blood pressure reading along with upper back pain provoked an alarmed physician assistant to call an ambulance in fear of a heart event. Tests were run, and nothing was found to warrant admission to the hospital and Mom was sent home.
Around this time, my sister Anne and I traded worried phone calls about Mom repeating the same idea during casual conversation, over and over and over, only seconds apart. I tried to correct Mom about her disturbing concern of relatives from Illinois not having input on the tile store that Mom and Dad own, when the real concern was that they have input on the family lake property. I gently explained that she was confusing the two entirely different subjects, but she was adamant and did not understand the distinction.
At the time Mom was convinced that her trip to the emergency room, and day long series of 'unnecessary tests', were the result of medicine gone wrong. She thought that the physician assistant overreacted. She wanted to be examined anew. By a new doctor who would look at her back pain for what it was was. Start over. But I heard this concern at least 10 times one evening. I feared that she was in early stage Alzheimers disease, of which her brother Harland, suffers today. Or possibly a mini stroke was causing her symptoms.
My parents received the news of Mom's brain tumor on the day of their 50th wedding Anniversary, September 22nd, 2010. The night prior, they were told to come to Dr. Robinson’s office for a very important 9 am meeting. My brother Mark went to the Dr office with my parents and was a rock for them while they heard the most devastating news possible. A 5.5 cm tumor located in the back left side of Mom's head had been found on the MRI taken the day before.
Two days ago, while holding Punkin on a lease with one hand and helping my Mom who was anguishing with pain with my other hand, Punkin began wheezing. I couldn't help them both so I held Mom's head with my hands and whispered and cried "I'm so sorry. Its going to be okay." And she kissed my cheek. But she didn't cry.

What You Don't Miss

Just read this amazing post by Robert Ebert. It hit home for me. And its true, you can accept losing things that you enjoy and take for granted. Because when you become accustomed to a new reality you see all that remains.

http://blogs.suntimes.com/ebert/2010/01/nil_by_mouth.html

Time for Fosamax

My doctor prescribed Fosamax at my recent appointment.

Results of a new analysis of data from the Women's Health Initiative (WHI) observational study showed that women who used bisphosphonates, which are commonly prescribed bone-strengthening pills, had significantly fewer invasive breast cancers than women who did not use bisphosphonates.

It appeared to make bone less hospitable to breast cancer recurrence.

I need to take care of some dental work first however. Bisphosphonates are associated with osteonecrosis of the jaw (death of the jaw bone) if the jaw bone is exposed during a tooth extraction or root canal. I have a root canal in my near future. Yay

Impermanence

Having had cancer affects my decisions. The realization that all things that we have and all our experiences are not permanent, has me making decisions quite different than before cancer.

The idea of impermanence, which is an important Buddist concept, was difficult to accept at first. Boy I fought it hard. Some days I still do. Its natural to pretend that things will continue as they are. Or that unwanted changes are far in the future.

But after two years of wrestling with fear and reconciling my hard held beliefs with what is real, I've accepted the impermanence of life.

Rather than have a root canal to save a tooth, I did a cost-benefit analysis and along with recognition that my body is not meant to last forever, I had it pulled.

I get frustrated and consider taking it out on others but most of the time I remember that moments with my family and friends are limited.

I am fortunate, because I am not putting things off these days. There is no guarantee of next year. I don't believe that cancer is progressing in my body. I do believe that I may not have as much time as I need.

It's the truth. For everyone.

Wake up. Don't wait. Enjoy and appreciate each moment as best you can.

Check up - Its all good

Had a checkup today. Exam went well. Tumor markers were slightly elevated but nothing of concern. Went for a chest xray afterwards. I'm confident it'll be clear. I'll have another bone scan in 3 months. Dr. Schmidt thinks its a good idea to stay aggressive with scans and exams for another 2 years. I'm almost to 2 years since diagnosis. 50% of recurrences happen in the first 3 years and each year that I am clean after that my risk of recurrence drops by 2%. It feels great to have it over with for another 3 months.

New Drug for Fighting BRCA1/2 Tumors!

Check out this article on a new drug called Olaparib that is especially promising for the treatment of cancer for BRCA 1 and 2 gene mutation carriers.

It was a small Phase 1 trial so its early in the process for making this drug available to treat cancer (outside of patients being treated in clinical trials). Its taken orally and has few side effects because it only affects cancerous cells, leaving normal cells alone.

Freaking Beautiful!

Bone Scan Results

My bone scan came back negative for cancer. This is a huge relief for me. Now I think of my rib pain as a result of surgery rather than wondering if it is a cause for alarm. One bit of not-so-good news is that I have bone degeration in my cervical spine since my last bone scan 18 months ago. Studies show that women taking Femara lose bone density at twice the rate of other women. I take extra calcium for this. My sister brought up a good point and that is that it would be a good ideal for me to start lifting weights to protect my bones. I agree and will look into getting some to use here at home.

Bone Scan Wednesday

This waiting is a test of my power of thought avoidance. No sense in thinking too much. But a clear scan would be so freaking great. My oncologist said that the doubling rate of cancer cells with my pathology is 30 days. So if there are any in my bones after a 12 month period the test would pick them up. I hope I don't have to wait over the weekend. I'm so glad we are busy with Tanner's french foreign exchange student here. I'm averaging three trips a day into town to transport kids so there's not much time for sitting around and stewing.

All Clear

12 months since chemo and my cancer markers and chest xray look good. My oncologist is ordering a bone scan since I continue to have rib pain on my left hand (cancer) side. The chest xray cannot pick up an anterior rib tumor and tumor markers have a 20% false negative rate. Thus, out of a abundance of caution I'll have a bone scan. Its been 18 months since my original bone scan. I will feel a good deal of comfort having a clean bone scan result.

I am relieved. Feeling good tonight.

Checkup Next Week

I rescheduled my checkup to Monday the 20th because I had accidently scheduled it for the same time as a class I am taking. I went and got my xray done yesterday however. I should hear about it tomorrow, or perhaps not till monday. Will let you know as soon as I hear.

Meeting Others Like Me

I went to my first support group last thursday. It's held at at my Oncology clinic and was attended by 3 other women. First of all I thank my clinic for doing this. They have two therapists there to guide the meetings. So there is cost for them. And of course they don't charge people to attend.
I suppress fear of recurrence as a matter of habit now. Except for when I break down. I suppose that happens every couple of months. My husband called around to find cancer support groups a few weeks ago and thats how I ended up at my first meeting.
Upon entering the room, which was relatively small, cozy, and very comfortable, I knew I was the new participant. The therapists were very kind and accomodating. They reviewed the 'rules' of the group, such as privacy and acceptance. Looking around the room I felt nervous, expecting that I'd need to introduce myself. When I looked at the other women I naturally tried to figure out their story. It was easy with one gal who was wearing a long blonde wig. No matter how good the wig or makeup you can tell when someone is still in chemo. She was the funniest and liveliest of the group.
I remember being that way. Trying to impress people that I was different than the typical 60-someting breast cancer patient. Not a victim. Not suffering and still vivacious. She put on a very good act. She has one chemo to go. I learned later that her breast cancer is not contained in her breasts. Ugh. She is about my age. Had a bilateral mastectomy, as I did, and is in chemical menopause. Her enthusiasm, while truely admirable and understandable, pierced my heart. She was so happy that I was there. We have alot in common.
I was asked to introduce myself. The first words out of my mouth were "I don't know if I can do this". Then I began crying. Being in a room with such kind people, some of whom understand on a level that no one else I know understands, overhelmed me. Jesus. I couldn't even say my name. I just cried.
They were patient though and I walked across the room to get a tissue and sat back down and started rambling. Started with my diagnosis. Where else would you start? Nothing before seemed important at the moment. I felt the needed to prove that I belonged. Yep, I had the qualification. The cancer passport. The upcoming 3 month checkup. Everyone nods. Everyone knows.
I'm going back tomorrow for another meeting. I have a checkup next Wednesday. My rib hurts. Same place as last time. Its not cancer. It just reminds me every few hours of the possibility.

Cancer Markers Go Down!

I got good news from my oncologist. Tumor marker tests came back with levels less than my levels from 3 months ago. My CEA (Carcinoembryonic Antigen) level was at 5 and my CA 27-29 was at 15.

CA 27.29 is a protein that is normally produced by breast cells. In people with breast cancer, the CA 27-29 level can increase. The protein amount can rise with breast cancer tumor growth and fall with treatment. Normal range is 0 - 38.6.

The carcinoembryonic antigen is a protein that may be present in people with cancer, including breast cancer. The CEA Test measures the amount of this protein in your blood. CEA is normally detected in healthy adults. An adult non-smoker should be under 2.5 and a smoker should be under 5. I'm not a smoker. But if my oncologist is not worried my level being at 5 then then I'm not worried about it.

My physical exam was perfect and chest x-ray was clear.

So I plan to keep doing things that I believe help stave off cancer recurrence. Eating mostly greens, a wide range of vegetables, whole grains, nuts, berries, red wine, green tea, dark chocolate. Limiting meat consumption to salmon & scallops a few times a week. Limit dairy products to cheese (organic when possible) and eggs (from free range chickens with no added hormones), on occasion. Exercising for 45 mins every other day. My exercise quantity will increase as the weather gets warmer and I can resume running outside.

I also take Femara 2.5 mg, a multi-vitamin, 2000 IU's Vitamin D, Vitamin B12, Fish oil and Flax oil capsules daily and calcium 3 times daily.

I am taking a class at the University of Montana. Its going to be over my head but I expect to learn alot from it regardless. Its called "Advanced Nutrition for Chronic Disease". We'll focus on how nutrition affects the diseases Diabetes and Cancer.

I can't wait to report back here with recent study findings.

Shaky

As the day of my checkup gets closer my body does funny things. I can keep the part of my brain that is in charge of logic pretty well under control. Only brief waves of worry piggy-back on my thoughts. My body doesn't listen to logic though, evidentally. It has its own way of worrying. My throat is tight and I notice every couple hours that my stomach is clenched like I'm preparing for a punch.

My fight-or-flight instinct is on high alert making panic a buddy of mine today. When I screw something up I panic inside. I wonder what I look like from the outside. Then I go into pandering mode. I want to make things better and end up feeling embarrassed of myself.

I am guessing though that everybody feels this at times. So I don't think I'm deficient because of my reactions. I think I would benefit from a support group though.

Checkup Time Again

Crap, 3 months goes by quickly. I haven't made my January checkup appt yet. Will get around to it soon.

After being obsessive with anti-cancer foods for several months I've been sliding toward a more normal American diet lately. Eating some sugar every day. Not a lot compared to my previous, pre-cancer days. Not eating anti-oxidant rich veggies every meal. Just a couple times per day. I'm keeping up on my vitamins and exercise pretty well. I actually ate some red meat the other night. Just a little bit.

Fear of cancer recurrence has taken a back seat to feeling shitty about my performance at work. I'm back to seeing a psychologist that I used to see, about this. I got off to a bad start at my job, because I started and was trained around the time of my last of 6 chemo treatments. The training I promptly forgot. My memory is getting better though, I think.

So I'll go in and get exams and tests and xrays and report back. I'd be shocked if they find anything bad.

Lucky Me

Me and my sister Christmas Eve. All is well.

Insurance Issue

I've been trying to get Blue Cross Blue Shield to pay for portion of my surgery bill from one year ago. We've had to pay the surgeon for this portion out of our pocket to keep it from going to collections. The deal is, I elected to have my ovaries taken out at the same time as my mastectomies because I'm BRCA2 positive with BRCA2 comes a high risk of ovarian cancer.

Got the verdict from BCBS yesterday and its a big fat no. The oophorectomy was elective. I really don't think it was elective. I bet 100% of oncologists would recommend it for a BRCA patient. You'd think BCBS would be interested in paying for preventative procedures that hopefully avoid further cost to them, in the form of astronomically expensive chemo treatments.

I'm not ready to give up yet however. There is a website called FORCE that deals specifically with BRCA gene mutation issues. Maybe someone there has tried to influence an insurance company to pay for a claim they initally deny.

Feeling Thankful

Feeling extra thankful this year for a happy & active family and for my continued good health and growing hair. Check out the collages below of Tanner, Quinn and Me & John. We made them using a cool auto-collage tool from Microsoft. The tool is still in Beta but John found it and here are the results.

2-Fer

I got a surprise moments before my colonoscopy was to begin yesterday. I was informed that I was also going to have a esophagogastroduodenoscopy! I initially said no, thinking it was a mistake. But the orders from my oncologist clearly stated that I was going to get scoped from both ends!

Backing up.... I should explain that prepping for the colonoscopy was not a big deal. Had to drink a gallon of slightly sweet, slightly salty solution the afternoon prior to my appointment. It made me feel a little naseous and really bloated until the solution did the trick and emptied me out. The hardest part was dealing with the hunger pangs. I had several eating dreams that night.

The next morning I took .5 mg of clonazepam (for anxiety) and checked in to the hospital at 11:30. By 1:30 the I.V. was in (on the first try yay!) and I was signing release forms and being wheeled in to the procedure room. Once again I was surprised by how cold they keep operating rooms.

I briefly met the doctor who asked me how I was feeling. I said fine and to please sedate me heavily. I did not want to know what was happening.

Shortly later I saw him insert a syringe into my I.V. and I began to feel dizzy and faint. He asked me to roll onto my left hand side. I remember nothing of the scope being put down my throat. However I do remember being told twice to breathe. A pharmacist that I work with, who spent some time as a tech for the procedure, said that sometimes a patient gets so relaxed they 'forget' to breathe and need to be reminded. I also remember complaining four times about pain during the colonoscopy. It felt kindof like labor pains and I think I yelled ow 4 times.

Next thing I knew I was in recovery waking up and wanting very badly to go back to sleep. I did close my eyes and try to go back to sleep a couple times but finally gave in to the nurse who kept bothering me by removing my I.V. Pretty soon John came in and I got myself dressed and rode the wheel chair up to the front door of the hospital.

John and I were really hungry (John fasted for a day in solidarity with me) so we headed to Johnny Carinos. I ordered some food but could only manage a few bites. I was just too wiped out and went out to the car to take a nap in the back seat while John hurriedly ate. We came home and I crashed for a good part of the night on the couch.

All & all it was a very relaxing day. And the preliminary report from the nurse in the recovery room is that both scopes found no problems. YAY! It sounded like one biopsy was taken but I'm not sure about that. I should hear from my oncologist about the final report within a week or so.

Not sure what, if anything, she'll want to do to look for another cause for my low iron level. I'll have another checkup with a CBC in January. Until then I'll continue to take an iron supplement daily.

Thanks for checking in on me.

One Year Since Cancer Took Over

One year ago I was petrified. Not really from the darn good chance that I had cancer. I had had a suspicious mammogram which called for a followup mammogram at the hospital. That second mammogram caused a stir. I was taken immediately for an ultrasound. Then scheduled for biopsies. One year ago today I was much more scared of the biopsies than of the thought that I might have cancer.

What I couldn't imagine then, after being diagnosed, was that FIVE months later I would be FINISHED with surgery and chemo. Those five months however were at times horrific and grueling. I'm referring to emotionally horrific and grueling. The physical suffering was secondary. Thats how I remember it now.

Whats on my mind now? I hate my hair.

I had my first post-chemo haircut a couple weeks ago. Not a whole lot she could do but trim the sides and back to make it look somewhat like a style someone might choose.

I should be damn happy to have hair. I need to be slapped back to April when I had no hair. What happened to my gratitude?

In many ways I've moved on.

John, Laurie, Tanner, Quinn and Anne Do The "Obama Can-Can"

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Xray Clear

My chest xray shows no sign of disease. I have a colonoscopy scheduled for mid November to look for bleeding to explain my low iron level. I've gotten some kind responses to my request for info about the procedure. Its not worth worrying about. It will also be nice to hopefully get a report of no sign of disease in my colon. I got sad news tonight about a friend who I admire greatly who I worked with for a few years that was recently diagnosed with metastatic colon cancer. She is an amazing, strong, incredible business woman and friend. I wish I could transport myself to Cleveland tonight to hold her hand and be with her and her fear.

6 Month Checkup

So far so good! Had my checkup with Dr Schmidt last wednesday and my physical exam and tumor markers both brought good news. I should hear about the results of my chest xray today. They will compare the xray taken thursday with one taken in July. If anything looks fishy Dr Schmidt will order an MRI. Whew! I can relax with that good news.

I found out that my iron level has plummeted down into the 20s which makes me a little anemic. My iron level was up in the low 100s in July. Usually the cause is bleeding somewhere in the stomach or colon. Bleeding can be caused by something innoculous like a small blood vessel that needs to be cauterized, an ulcer or something more serious like colon cancer. So Laurie gets to experience a colonoscopy soon to look for the problem and fix it. I believe it will not be serious and easily fixable.

Anyone had a colonoscopy? Does it hurt? What kind of sedation did you have? Comment or email me okay?

I'll be back with xray results. Thanks for checking in on me.

Easier

Its easier to talk and think about cancer from a purely scientific perspective. Its alot less scary than focusing on emotion and fear. I think thats why I gravitate to books that discuss theories and action plans for keeping cancer at bay.

If you have cancer and haven't read Anticancer. Read it. Please. It will make you feel powerful. I worry less about recurrence because I am following the recommendations in this book. Really, everyone could follow the guidelines because its good healthy stuff.

My 6 month checkup is next wednesday. I am so happy that John will be able to go with me this time. My sister Anne was great company and support for my 3 month checkup. She made a nerve-racking 4 hour ordeal comfortable and even a little bit fun. Thats Anne for ya. God, she is a great sister.

Anyway, back to thinking about cancer scientifically. Viewing the disease from a cellular level allows me to consider what happens without emotion. Cancer is just cells. Cells refusing to die. Bully cells versus an immune system. But I believe I have a really strong immune system. I haven't been sick in years! Even during chemo at my weakest I did not get a cold.

Without estrogen fertilizer in my body feeding cancer cells, I think that any growth of cancer is surely slowed way down. So I am going into the 6 month checkup feeling good about my future.

Trying

Lets just say I am trying. Trying meditation. Exercising every day. Trying not to eat anything bad. Trying to eat cancer-fighting foods at every opportunity. Trying to remember day-to-day what those foods are. Trying not to spend money in order to feel short term relief from fear. Trying not to drink. Trying to breathe. Trying to enjoy moments.

I need to make an appointment for my 6 month checkup. Really should do that. But I am too busy being preoccupied with controlling myself that it doesn't get done. It surprises me that they don't give you a sticker, like the oil change places do, to remind you that you need to get your ass back in to be checked for evidence of disease.

I have quite a bit of faith in my ability to make my body inhospitable to the growth of cancer cells. I understand now that we all have the makings of cancer in our body. Its up to our immune system to take down rouge cells before they gain traction. A cancer cell causes our immune system to inflame the area around it and tricks our body into building a special blood supply to feed it. It does not follow the rule of cell aptosis (cell death) that healthy normal cells follow. It multiplies instead and creates a larger and larger cancerous mass that starves healthy cells surrounding it.

I believe that by following a diet consisting of anti-inflamatory foods I am making my body less hospitable to cancer growth. Time will tell if I believe in false promises. The explanation makes sense to me though and I don't feel deprived with the diet. It's laid out in the book Anticancer (and many others).

I'm still scared shitless sometimes though. Thats just the way it is.

Anger & Pain

I'm completely off the anti-depressant that I began taking shortly after I learned I had cancer. I tapered off the drug a few weeks ago while in Fiji. A great place to do it. Since then its been a daily struggle controlling anger that was hidden beneath a Lexapro blanket.

I am just really mad about having to deal with cancer and the body it's left in its wake. There's no getting around it, I really hate cancer these days. Gone, from my current perspective, is the notion that being stricken with cancer is worth it in order to revel in each ordinary day. I'm so angry that it took a crisis to make me value and care for the body that remains.

Upon waking I am not angry. It builds gradually beginning with my first steps out of bed. Each time I am forced to slow down and wait until pain in my ankles, knees and hips subsides I grow more frustrated. I must start slowly. Each time I rise from a chair. Or bend my knees to reach for something below. Or begin a run. Or stretch my legs.

I go to yoga now three times a week at a wonderful studio. One teacher pushes me pretty hard. I haven't told her why I can't straighten my arms when a pose calls for reaching overhead. But she helps me so much by forcing my arms to straighten because that is not something I can do by myself because of scar tissue from the mastectomies. The classes are in the late afternoon or evening and by that time I am usually pretty tense and hypersensitive. There hasn't been a class that I didn't want to quit. Run out. To cry. I get so frustrated with my limitations. And the pain. The class moves on though and distracts me enough to move me through the crazy emotions, ending with several minutes of peaceful meditation.

I am also hypersensitive to noise. Especially in the evening. If the t.v is blaring and someone is trying to speak over the noise my pulse quickens and chest tightens. I put up with it as long as I can and look forward to the peace and quiet of the night.

Last weekend at the Grizzly football game I was at the end of my rope frustration-wise by part way through the 2nd quarter. Luckily my sister was working the entrance at the other side of the stadium so I had a reason to leave the crowd for 20 minutes and enjoy talking with Anne. It is a bit too crowded where we sit. And its difficult at times to concentrate on the game because of constant chatter among the people in front and next to us. I avoided eye contact. Sensory overload and heat from the sun added to the anger and frustration inside of me. I took a long walk outside of the stadium at halftime to relax. Late in the third quarter my mom and I explored the new stadium expansion and cooled down in the shade provided underneath. I was very happy to leave the game early and escape the overwhelming atmosphere.

So that's where I'm at. Looking for healthy ways to express anger that has been pent up for close to a year now. I know that this too will pass.

Anticancer

I'm hell-bent on healthy living. These days, when my mind is not engaged in learning how I can fight off disease, I am scared. When I'm scared I don't take a full breath. In this state it hurts to breathe deeply. So, to fend off recurrence fear death spirals (think fighter pilot spiraling toward earth) I keep my mind busy.

My mind is not easily diverted from fear however. I have started, literally, 10-15 books in the past couple months. Haven't gotten more than a few chapters into any of them. What a waste of money.

That is until a few days ago. I found of book that is quenching my thirst for knowledge. You know when you find a book that connects to the very core of your beliefs? You want everyone to read it. Especially the people you can't live without. Please read this book. Anticancer - A new way of life. If you have cancer, someone you love has cancer, or you are even mildly concerned about you or a loved one getting cancer (that should include all of you) do me a favor and read it.

Bula Laurie

That's how I was greeted when crossing paths with a Fijian on Navini Island. Navini is a remote, private island inhabited only by the owners, the Fijian staff and visitors like us staying in one of the 10 bures.











You get to know the friendly Fijian island staff by name because they spend time with you. Cooking and serving fresh delicious food with genuine welcoming smiles. Teaching you how to weave a basket using palm fronds. Climbing a coconut tree and collecting a coconut for you so that you can taste the sweet milk and flesh inside.




















Guiding you on a snorkle excursion through the warm blue pristine water. Sikeli taught me how to dive down deep to see a giant clown fish and sea anenome hiding beneath a forest of colorful coral. He also warned us to shuffle our feet through the sand to avoid surprising a beautiful green and blue polka-dotted stingray. We swam along side baby sharks that circle the island and schools of a variety of brilliantly colored fish and coral.



















The Fijians included us in games of Vindi Vindi during the kava ceremony each evening. We spent time and became fast friends with couples from London, Italy, Australia, Poland and New York.



















We Parasailed!
















We were honored to be asked to be witnesses for Mark and Frankie's beautiful beachside sunset wedding which was punctuated by Frankie being escorted down a sandy path by two Fijian warriors. It was an unforgettable and beautiful ceremony and I wish them many many years of health and happiness!




















We filled our days with snorkling, beach volleyball, sea kayaking and reading and napping under our palapa, surrounded by the ever-present sound of the surf. Shoes were taken off on arrival and left off for nine days.

















No t.v., phone or newspaper to interrupt our 9 days of catharsis. I was even invited by a wonderful lady from Australia to do yoga with in front of her burre several times.




















John and I left our troubles behind, experienced with wonder and excitement the world below the surface of the ocean, so enjoyed the Fijian people, cried some pent up tears and felt time s l o w down. Just what the proverbial doctor ordered.

Time To Rejuvenate

This time next week John and I will be on the beach in Fiji! After a trying year for both of us we decided a few weeks ago to look for a great place to snorkle and escape for a while.

Navini is a small island. You can walk around its shore-line in 10 minutes). No day-trippers are allowed so it will just be us, the resort staff and the occupants of the other 9 bures on the island.

I am so excited to learn about the Fijian culture. We'll have the opportunity to visit villages on other islands as the Navini island staff will boat, us free of charge, on an excursion each morning.

We also plan to parasail.

We are so fortunate to be able to take this trip. Renewal is important. So is taking advantage of every day we have on this beautiful planet!

Is It All In My Head?

So the good news is....the muscle and joint pain I feel is not caused by my joints degenerating. I was getting quite concerned that Femara, which keeps my body from producing estrogen, was having a degenerative effect.

My ankles, knees and hips ache. This is not new. For a while now, however, I've felt that my knee joints were slipping when I am out running. Do you know the slipping feeling? You get a sharp pain below the kneecap and then the knee sort of collapses and you have to catch yourself. My mind associates lasting new abnormal aches and pains, that occur more than they used to, to the effects of Femara.

So I submitted another question to the University of Montana Drug Information Service. I wanted to know if my joint pain, stiffness and slipping weirdness was going to progressively get worse. I wanted to know if it was caused by Femara. My fear was that I wouldn't be able to run at some point. Below is their response.

Thank you for your question regarding Femara and muscle or joint deterioration.

Femara (letrozole) is an aromatase inhibitor that is used in the adjuvant treatment of breast cancer and the prevention of its recurrence. It blocks the action of the aromatase enzyme, which converts androgens to estrogens. Letrozole causes the near complete inhibition of the aromatase enzyme, which will results in a considerable depletion of estrogen levels after two to four days of therapy. This results in the starvation of estrogen-sensitive cancer cells. There have been no published reports of letrozole causing muscle or joint deterioration, but it has been reported to cause musculoskeletal pain, with a 22% incidence of arthralgia and bone pain, 18% incidence of back pain, 10% incidence of limb pain, and a 7% incidence of arthritis and myalgia. The exact cause of musculoskeletal pain is unclear, but the estrogen deprivation associated wtih aromatase inhibitor therapy may provide some explanation.

Estrogen may have an effect on how a person responds to pain. It has been shown that estrogen seems to have an anti-inflammatory effect on tissues in the body, which has been illustrated by the improvement of rheumatoid arthritis, multiple sclerosis and inflammatory bowel disease in women who are pregnant and therefore have higher estrogen levels. Studies suggest that high levels of estrogen may help reduce pain by causing the release of endorphins and enkephalins in the receptors that reduce pain sensitivity in the body. Neurons in the brain and spinal cord that contain opioid receptors may have estrogen receptors that reduce pain sensitivity in the presence of estrogen. When estrogen levels decrease, the ability to reduce pain is diminished. Estrogen deficiency can also cause loss of bone mineral density, which may also contribute to arthralgias.


Aromatase inhibitors such as letrozole, can cause musculoskeletal pain. The exact mechanism is unknown, but there have been no published reports indicating the pain is due to joint or muscle deterioration. The current hypothesis is that the estrogen deficiency caused by aromatase inhibitors may be responsible for increasing the body's sensivity to pain.

There you have it! The pain is in my head (my brain to be exact)! I feel pain more clearly now because I don't have estrogen to block my brain from perceiving it. Thats all. This makes me feel much better about my future. I can handle the pain. Anyone who exercises knows that pain from working your body can feel good. You know you have "damaged" your muscles enough that they will rebuild stronger.

Now when I wake in the morning and hobble to the bathroom I will remember that my joints are fine. I am just feeling more than I used to.

Here's John and I out on a hike a few weeks ago. Check out my hair 3 months post chemo!