How I deal with what I was dealt

Progression Of An Aggresive Glioblastoma Brain Tumor

2011-03-20T08:25:00.000-07:00

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

2010-10-15T20:20:00.000-07:00

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

2010-03-04T23:48:00.000-08:00

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

2009-12-29T19:46:00.000-08:00

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

2009-09-23T21:08:00.000-07:00

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

2009-08-03T21:06:00.000-07:00

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!

2009-06-29T12:59:00.000-07:00

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

2009-05-01T07:35:00.000-07:00

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

2009-04-27T20:05:00.000-07:00

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

2009-04-20T18:58:00.001-07:00

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

2009-04-16T20:18:00.001-07:00

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

2009-04-08T19:23:00.000-07:00

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!

2009-01-28T20:23:00.000-08:00

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

2009-01-19T15:00:00.000-08:00

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

2009-01-06T21:13:00.000-08:00

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

2008-12-29T22:11:00.000-08:00

Me and my sister Christmas Eve. All is well.

Insurance Issue

2008-12-03T16:41:00.000-08:00

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

2008-11-24T09:27:00.000-08:00

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

2008-11-18T19:07:00.000-08:00

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

2008-11-05T19:41:00.000-08:00

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"

2008-11-03T08:58:00.001-08:00

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Xray Clear

2008-10-23T19:32:00.000-07:00

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

2008-10-20T08:43:00.001-07:00

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

2008-10-06T20:22:00.001-07:00

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

2008-09-29T21:00:00.000-07:00

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

2008-09-17T17:06:00.000-07:00

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

2008-09-07T20:35:00.000-07:00

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

2008-08-28T16:43:00.002-07:00

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

2008-08-08T13:37:00.000-07:00

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?

2008-08-06T16:37:00.000-07:00

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!

Does Femara change red wine's effect on estrogen in the body?

2008-07-30T20:25:00.000-07:00

I posed this question to my boss, a pharmacist, and an intern, at work one day. They graciously did research for me and also contacted the University of Montana Drug Information Service.

You see, I love a glass or two of red wine before dinner but the current advice from the American Cancer Society is to avoid alcohol altogether if you want to not raise the risk of breast cancer. I have estrogen-driven cancer so they are talking to me.

Now I have posted before about a study on mice that showned that a phytochemical in red wine has an anti-cancer effect. But does that finding cross over to humans? And could Femara counteract the increase estrogen circulating in the blood stream that happens when I drink a glass of wine?

Here is the answer from the Drug Information Service:

Thank you for your question regarding Femara (letrozole) and its ability to decrease red wine's effect on estrogen in the body.

Estrogen plays a large role in the human body, especially in female patients who have experienced breast cancer or other hormone sensitive cancer. The substances in red wine believed to have possible effects on estrogen and cancer are phytochemicals. Resveratrol is the phytochemical that has been studied the most. Letrozole is an aromatase inhibitor that is used to treat breast cancer, because it inhibits conversion of androgens to estrogens. Currently there are no published reports of a food-drug interaction between Letrozole and red wine or red wine extract.

Red wine is thought to be cardioprotective. However the data on its effects on breast cancer are conflicting, with some studies showing an increased risk and others showing a decreased risk. There have been no studies conducted with both red wine and letrozole, but there have been several studies conducted with red wine extract in animals. Studies in mice with over-expression of aromatase found that red and white wine have both in vivo and in vitro aromatase inhibitor activity. The studies used samples of several types of wine, including pinot noir, merlot, zinfandel, hardonnay and carbernet. Another study found that red and white wines only have estrogenic activity in mammalian cells, since the extracts had no effect on a yeast estrogen screen assay. These studies included all active components of wine, not just resveratol. Red wine has more aromatase inhibitor activity that white wine because the grape skin, where phytochemicals are primarily found, is removed when making white wine.

There is currently a study being conducted in healthy premenopausal women examining the effect of red and white wine on estrogen and progesterone levels. The results of this study will most likely not be published until late 2008 or early 2009.

The data regarding red wine, estrogen and Letrozole is limited at this time. The studies provide insufficient data to prove red wine's effectiveness as a chemoprotective agent. It is possible that the aromatase inhibitor activity of both agents could be additive; however there are no published reports of an interaction between Letrozole and red wine.

There you have it. No conclusive answer available and no study in process that is looking at Femara's ability to counteract the rise in estrogen level caused by drinking alcohol. Maybe some day we'll have the answer. I haven't quit drinking red wine but think twice about it each time I have a sip.

First Day Of My Life

2008-07-23T22:50:00.000-07:00

Can you let go of the stupid shit that distracts you from the important ones in your life for 3 minutes? I hope so. Put on your headphones and listen to Bright Eyes.

Level Out

2008-07-20T12:09:00.000-07:00

Will this post resonate with you? For some it will. For some it won't. It's written in sympathy for the people in the first group.

I no longer feel as though I'm dying. I BELIEVE I am well today. I didn't convince myself. I've never been able to force myself, through sheer will, to believe something. After I was diagnosed, well meaning assurances that I would be okay only magnified my doubt about my prognosis. Those assurances, however, played an important role in my journey. They caused me to explore why someone telling me to "be positive" made me feel inadequate and weak. Hearing "you'll be fine" felt like the kiss of death. I heard these things from people who I am not very close to and they meant well.

I believe that I came to center, leveled out, by spending alot of time in mourning. Exploring what death means. Understanding how we die. Really coming to terms with the truth that our society shushes. Becoming comfortable with going to sleep forever.

For those who are suffering from cancer and debilitating fatigue, depression and fear, I hope you allow yourself to grieve your losses. Allow yourself to feel terrified. Allow yourself to mourn for you and your family. While being strong and staying positive is important because it will help those around you, its okay to go off on your own and get angry and cry until you sleep.

This song is for you.

When panic grips your body and your heart is a hummingbird
Raven thoughts blacken your mind until you're breathing in reverse
All your friends and sedatives mean well but make it worse
Every reassurance just magnifies the doubt
Better find yourself a place to level out

Got a cricket for a conscience always looks the other way
A cocaine soul starts seeming like an empty cabaret
Hey, where have all the dancers gone? Now the music doesn't play
Tried to listen to the river but you couldn't shut your mouth
Better take a little time to level out

I never thought of running
My feet just led the way

Mixed up Signals
Bullet Train
Cars are switched out in the crazy rain
I could meet you any place
If the Brakeman turns my way

All this automatic writing I have tried to understand
From a psychedelic angel who was tugging on my hand
It's an infinite coincidence but it doesn't form a plan
So I'm headed for New England or the Paris of the South
Gonna find myself somewhere to level out

Are your brothels full, Oh Babylon, with merry Middlemen?
Never peer out of their periscopes from those deep opium dens
All this death must need a counterweight always someone born again
First a mother bathes her child then the other way around
The Scales always find a way to level out

I tried to pass for nothing
But my dreams gave me away

Mixed up Signals
Bullet Train
People snuffed out in the brutal rain
I could live to any age
If the Brakeman turns my way

It is an old world it's hard to remember
Like a dime store mystery
I'm a repeat first time offender
Who has rewritten history

Mixed up tea leaves
Phantom Pain
Fuzzy logic in the crazy rain
Getting better every day
If the Brakeman turns my way
Mixed up Signals
Bullet Train
Cars are switched out in the blinding rain
He'll be smiling as he seals my fate
When the Brakeman turns my way

I Passed!

2008-07-17T20:57:00.000-07:00

Guardian Oncology called this morning while I was at work. I'm well. I'm really better than well, I'm fantastic!

The tumor marker tests CA 27-29, CEA and CA 15-3 all came back good. The CA 27-29 number is slightly raised from 3 months ago but not a significant amount. I had a worrysome result from the CA 27-29 during chemo.

The CA 125, for ovarian cancer came back below 1. They had never seen a result this low before so they had it retested. There was no mistake. Its really that low. Its really that good.

An arthritis test also came back negative. My vitamin levels are good. Slightly anemic but not too bad.

Nothing but good news. I have no need to worry. I'm healthy as I can be. Could I be 'cured'?

3 Month Checkup

2008-07-09T19:36:00.000-07:00

What do you do when you are nearing panic and your 3 month cancer checkup runs two and a half hours late? You go shopping thats what.

There's just nothing like shopping to refocus your thoughts. And when the mall is having clearance sales on summer stuff like swim suits, shorts, cute dresses you can make off like a bandit. Spent close to $200 shopping today and really only need to pack brand spanking new clothes for my trip to Michigan tomorrow and it was worth every cent to me.

Having my sister with me in the waiting room, torture room (where they draw the blood) and exam room was priceless.

Six vials of blood, 18 (yes, thats right eighteen xrays) and an hour with my oncologist and I missed my whole shift at Target. You know what? I don't even have my cancer marker results or 16 of 18 xrays analyzed and I feel so much better than this morning.

What I love about my oncologist, Dr. Judy Schmidt, is that she doesn't sugar-coat anything and thus I trust her 100%. I was completely open with her about my bad habit (daily wine consumption) and with my belief that my cancer will recurr. I told her the reason I am so certain is because of my high oncotype , grade and mitoses scores. She did not tell me to just relax and stop being so negative. What she told and showed me is that I will be watched very carefully over the next 4 years. Three years of seeing her every three months, then 1 year of seeing her every 4 months, followed by X years every 6 months. She also told me that the mean recurrence time for an aggressive cancer, if it were to recurr, is 30 months thus the aggressive monitoring.

My complaints were aching and stiff joints, which I've bitched about plenty on this blog. Sore ribs on the cancer side and a sore spot in my clavicle on that side. Although she spotted a torn ligament on physical exam that is undoubtedly the cause of my lower rib pain, she ordered the 16 additional xrays just to rule out cancer in that area. Those xrays combined with the results of a couple of cancer marker blood tests will determine if we look any further into the rib pain. If she doesn't like the blood test results or xrays she will order an MRI.

They are short staffed in the lab so I will likely need to wait until monday for the cancer marker results. I should have the xray results tomorrow. They'll call my cell phone. I have to tell you that phone calls from Guardian Oncology give me a few seconds of terror until I hear the results. Makes me not want to answer my cell phone for the next few days.

Dr. Schmidt also ordered ovarian cancer marker and arthritis tests. She wants to make damn sure I don't have anything bad brewing down below. She stated that I still have an elevated risk of ovarian cancer even though I have my ovaries taken out. NOW THEY TELL ME! I actually think she has her statistics wrong on me still having an elevated risk but I wasn't going to argue. What's another vial of blood right? I had a clear pap smear a couple weeks ago. So that is cool.

My white blood cell count is low which she said is likely still because of one of the chemo drugs, cytoxan. Gonna take more vitamins (folic acid, vitamin d, vitamin b-12) to try to bring it back up.

Well thats it in a nutshell. Where I was quite stressed and panicing this morning, I am feeling better tonight. Thanks to Dr. Schmidt, sister Annie and my sweeter than sweet husband John for calming me down this morning.

Gotta go pack. The laundry that needs to be folded is gonna wait. I'm off to see my Michigan homies tomorrow! Can't wait.

Solidarity

2008-07-07T21:20:00.000-07:00

When I was recuperating in the hospital from my oophorectomy/mastectomies, John Brownell Senior, who was also in the hospital at the time, passed a message on to me that he was having his ovaries removed in solidarity with me. Now that is a sense of humor. Classic John Brownell Sr. humor. Even while struggling with his own serious health concerns he gave his gift of humor to make me feel better.

This brings a tear of joy to my eyes. There were many moments like this in the short time I knew this man. Sitting with the family on any given evening Mr. Brownell would get a wry smile on his face. Sometimes he would share the thought with us, most times not. Whether he chose to or not was not very important. I found it easy to connect with him by sharing in the entertainment of sitting back and enjoying a Brownell family discussion.

I found such inspiration in him. He taught me how to make the best of the little moments. His effect on me did not truely bloom until after I recovered from the initial shock of a cancer diagnosis. Later, during chemo, I knew that no matter how crappy I felt he was a thousand miles away doing his best to find joy in each day despite his challenges.

I feel confident that my checkup on Wednesday will generate good news.

If some day I get the news, that cancer people can't bear to hear, I will try hard to continue to find joy in the small moments and help others along. Meaningful relationships happen that way.

I Hope You Know

2008-07-05T22:01:00.000-07:00

I hope you know how much you are missed John Sr. The void caused by your passing is felt way out here in Montana.

You live on. In your family's mannerisms, intelligence, integrity and bountiful joy for living.

For those of us fortunate enough to have known you, the 4th of July has new meaning. While the day will forever be tinged with sadness, we can gather each year to celebrate your life, tell stories and perhaps find comfort in shared grief.

You lived well, fought the good fight and took care of your family until the last moment. Rest in peace dear man.

His Extraordinary Courage

2008-07-01T18:16:00.000-07:00

My heart is with my father-in-law tonight. He is in the hospital. The hospital is the last place he wants to be and he held off as long as he could before admitting himself late last week.

John Brownell Senior is courageously enduring until he can go home. He has persevered downturns and rebuilt strength several times since I met him a few years ago. I have not seen him complain or feel sorry for himself. In fact, even when feeling deplorable, he generously gives his gift of humor. Taking the burden of harsh sadness off of others onto his shoulders. His family needs him and he does everything in his power to be there with his wise and loving counsel and support.

I believe he can come home again.

What I Wouldn't Give

2008-06-26T19:56:00.000-07:00

To be told that there is a cure. Like this one. Melanoma is a frightening form of cancer. Especially stage 4. Yet this man, with stage 4 cancer received this revolutionary treatment and appears to be cancer free after 2 years. Reading this article makes me feel like it could really happen for all of us. A treatment that does more than save a life. A treatment that gives another a release from the fear that a recurrence will drastically alter their life again.

Man, my 3 month checkup cannot come soon enough. I am looking now at another condition and what it might mean. The skin on my left hand side, where my breast used to be and that which swelled after surgery because of a seroma, is puckered and wrinkled and has a scaly appearance. I've always assumed that the scaliness would go away, but it hasn't. The skin is totally numb. All nerves there are dead. Well my internet wandering eyes find that skin that is puckered and scaly is a sign of advanced breast cancer. Crap. Reading that makes me nervous as hell. But, realistically its just my skin doing the best it can after surgery.

I really just need to see the doctor.

Would You Care To Share?

2008-06-24T21:05:00.000-07:00

How has my, or another loved one's diagnosis or personal tragedy affected the way you live your life afterward?

If you don't feel comfortable posting publicly and would like to help me learn about how people react and change from another's life altering event, feel free to email me at lpacemissoula@hotmail.com.

Thank you in advance for sharing.

Subconscious Manipulation Part Deux

2008-06-24T20:24:00.001-07:00

I made an appointment with my oncologist today for my 3 month post chemo checkup. It's set for a couple of weeks from now, July 9th, the day before I head to Michigan to visit John's parents, grandma and his sibling's families. I am so excited to go. The last time I saw any of them was a few days before my mastectomy/oophorectomy surgery last November. We'll have so much fun catching up. There will be lots of hugs, smiles, storys and some really good food and wine to share. Brownell family here we come!

I had a dream last night that is indicative of my current state of insanity. John woke me up in the middle of the night because I was shaking and moaning and was covered with goosebumps. I remember him waking me and I was able to tell him what I was dreaming about.

I was at a school with my sister Anne to learn how to be wizards. Wizards, that when fully educated and experienced, can cure cancer. The school looked in my dream like Hogwarts, Harry Potter's boarding school of wizardry. We had made it through the first year of challenging courses. We had left our families in order to attend. When John woke me up, Anne and I were flying through the air, laughing an evil laugh, chasing a poor human who was running from us on the ground. At the same time we were being chased by flying demons/ghosts. It was terrifying. Aaaaaack! It makes my chest tighten up thinking about it.

I have a fear that a pain in my left ribcage might be a cancer metastisis. I have felt it for the last 4-5 days when my bra presses against it. Or especially when I lay on that side.

Now, the chance of it being cancer are probably miniscule. The thing that is driving this fear is that the sore spot is located behind where my tumor was. I now understand why people worry incessantly about aches and pains that you would not give a second thought. Aches and pains that turn out to be nothing to worry about. Its commonly told to cancer patients to wait 2 weeks before reporting a worrysome symptom to your oncologist. It will probably go away before then.

My rib will stop hurting any day now too.

Be A Good Girl And Eat Your Mushrooms

2008-06-24T09:53:00.000-07:00

This is very cool. White stuffing mushrooms inhibit aromatase, which is an enzyme that the body needs to produce estrogen. Researchers used laboratory and mouse studies to confirm that the anti-aromatase compounds stopped the growth of breast cancer cells. They found that mice that were fed mushroom extract had a 58 percent reduction in breast tumor growth. Read the complete article here.

This anti-cancer effect is also being studied with respect to prostate cancer.

Fun Weekend At The Lake

2008-06-22T21:44:00.000-07:00

Had a magical weekend at the lake. Fun, easy days enjoying my family. Watching my son and nephews head straight to the dock and jump on the jet skiis for their first rides of the year. Permagrins on their faces out on the water. Lots of laughter and screams from the shock of cold water and terrifying tube rides. Pristine green foliage. The smell of pine trees. Happy faces all around. It was a beautiful sunny 85 degrees. The lake was like glass on Saturday.

Appreciating my dad. He works so hard to make the lake place heaven on earth for his family. He worked 90% of the time that he was there this weekend and that is only a fraction of the time and expense that he has so generously given this spring. Appreciating my mom and sister. We had so much fun painting and redecorating our beloved cabin.

I would post pictures but I forgot my camera in Kalispell. Will be sure to share some as soon as I can.

I am so happy and grateful for what I have.

John on the dock a couple of years ago.

Me pulling a skier a couple summers ago. Yes, I should be looking where I am going.

So Here's What I'm Thinking

2008-06-18T21:17:00.000-07:00

I'd like to write a small book. A guide for people newly diagnosed.
Not from a medical perspective, there's plenty of those. My book will describe the emotional side of cancer. It will serve as a guide through the process of losing your sense of self. Of rebuilding.

That's what happens when you get diagnosed.

You go through profound changes in a very short amount of time.

You lose your looks. You do what you can to not draw attention to your self when you grow pale, thin, hairless and weak.

You lose your safe foundation that has been meticulously constructed. First built from your parents beliefs that are ingrained in the very fiber of your being. Then through the lessons, big and small, learned through your school and adult years. Drastically, that safe foundation is ripped out from under you and you grapple with fear issues and frightening surgery and medical treatments.

You lose the ability to function at a high level. Its embarrassing.

All of these things can lead to isolation.

Its my hope that I can explain, from the perspective of someone who's been through the ringer, how important it is to feel the grief. Collapse and surrender to the fear. Cry like you've never cried before. Acknowledge your mortality. Thrive from the lessons that physical suffering brings. Experience the overwhelming warmth that loved ones provide. Dive in deep when shared fear and realization that life is short gives you the chance to deepen relationships. And then smile, when you wake up and realize that you have several days ahead free of nausea and feeling poisoned.

Some days are a struggle. Other days are precious and you feel a level of contentment many others are unaware of.

The old Laurie would have never attempted writing a book. The cool thing about getting cancer is that its given me a what the hell attitude. What the hell.

My Body Without Estrogen

2008-06-14T21:14:00.000-07:00

There is a downside to taking a prescription drug that keeps your body from creating estrogen. Since the cancer cells from my biopsies were tested and found to feed off estrogen, taking Femara is a no-brainer.

I've been on Femara for 8 weeks now and the side-effect of stiff and painful joints is spreading. Just this week my shoulders and elbows started aching when I sleep. I don't feel achy in those particular places during the day. My hips and ankles bother me the most during the day. Pain and stiffness in my hips, knees and ankles is most pronounced when getting out of bed.

Another interesting side effect is muscle soreness after exertion. I'm not talking about normal soreness I grew accustomed to during my 20+ years of running. Now, when I up my mileage a reasonable amount I am sore for 4 or 5 days. Prior to Femara, soreness only lasted the typical 48 hours. Scientific studies have found that estrogen plays a part in healing strained muscles.

I don't like to think about what shape my joints will be in after being on Femara for 5 years.

Breast Cancer Survivor

2008-06-13T14:41:00.000-07:00

I don't care for being referred to as a breast cancer survivor. My image of a survivor is someone who has won a battle. Someone who can celebrate their victory and put the ordeal behind them. For me, survivor doesn't define what being stricken with breast cancer is about. To me, more appropriate labels include unlucky, casualty, prey, underdog.

When I traveled to Helena for the Komen Race For the Cure last month I was surprised how strongly I was repelled by the label of survivor being thrust upon me. I didn't want to put on the pink survivor t-shirt. I didn't want to be part of that group. I was not proud to be part of the group. I was there to run a race. I was there to run with my son, nephew and sister and enjoy being active and strong after a depressing winter of chemo treatment. I was there to visit Jody, my dear sister-in-law from my previous marriage, who has supported me with such unselfishness and kindness.

When it was time to join the other survivors on the Capitol steps I reluctantly put on my pink t-shirt and walked up with the 1 year survivors. The other groups of cancer survivors were called up according to the length of time since their diagnosis. Then it was announced that the song "We Are Family" would be played so that we could clap and sing along. After the song started I looked around at the singing and celebrating women surrounding me and I felt irritated and indignant. What were we celebrating? Being afflicted with cancer? I can't celebrate, in any way, having a harrowing, hideous and vicious disease.

We can't fight to survive cancer. Either treatment works or it doesn't. We are either lucky or we're not. Its quite simple, we take the treatment and we endure. We try to stay positive. Not because we really believe that a good attitude increases our chances of surviving, but because its easier to cope that way. And, the really great thing is that we don't know which direction we are headed.

Survivor my ass, its not that glamorous.

Featured Blogger

2008-06-13T11:54:00.000-07:00

I was contacted by the Chief Medical Information Officer at Wellsphere.com, where they are building a network of health bloggers. They are going to put my blog stuff within a not yet live Breast Cancer community area of the site, and also within a magazine-like Wellsphere360 section. If I contribute often enough they'll feature me on the home page. I'll give you a link once my stuff is published there.

I'll Believe Anything

2008-05-30T20:24:00.000-07:00

Last week was one of those weeks that cancer people have. Where the mind keeps nudging you to pay attention to the fear that stalks you. Maybe if you stop and focus, and just think intelligently about it you'll find the solution. You'll find some sort of proof that convinces you that you don't need to keep your thoughts in the present. Regain the courage to dream beyond 5 years. But no matter how many times you replay conversations with the oncologist in your head, or review statistics, the problem cannot be solved. Rightly, no credible doctor or researcher will give you a guarantee of a future without the return of cancer.

After several days I was just plain tired of being fearful. Being around others was difficult. I preferred to be in a dark quiet place because I didn't have much tolerance for noise. Searching online for new articles about developments in cancer research was comforting because it kept my mind occupied. When I failed to find the nebulous information I was seeking I started reading other cancer people's blogs. I came across Bert Scholl's blog and read it with interest. This reading introduced me to the Gerson Therapy. A natural, diet-based cancer therapy. Bert's blog intrigued me enough to look further into the therapy. Watching the 11 part video series on YouTube took me the good part of a Sunday. I was enthralled. The stories told started to give me hope. Hope for a future without worry and sickness. All I had to do was follow this diet/supplement/enema regime. I truely began to believe. With all my heart. I had spring in my step again and I was excited. Secretly I started thinking about a way that I could go to the Gerson clinic in Mexico to begin the therapy as a way to forestall a recurrence of breast cancer.

When John walked into the room while I was watching a Gerson video I felt defensive. I didn't want any one to burst my bubble of hope and optimism. I so badly wanted to stay optimistic about having a future without worry. But, it was at that moment that I realized that I was deluding myself. My dream of a carefree future began to unravel. When John left the room I cried.

I held on to the dream though for a few days. I don't remember exactly when I stopped. I just stopped looking for proof.

I am not ashamed to admit that I was foolish. You can snicker and laugh. It won't hurt my feelings. I won't stop myself from following another foolish dream in the future. It felt that good to be carefree for a while.

Janitors Say The Darndest Things

2008-05-27T20:37:00.001-07:00

At Target we have a sweet, but most annoying janitor. Each morning, like clockwork, he comes to the pharmacy to have one of us come and unlock the pharmacy-only restroom so that he can clean it. I understand why, now, that management doesn't just give him a key. We would not feel comfortable using the restroom knowing that he has a key.

The pharmacist always gets very busy when the janitor asks to be let in, so its always me that goes out into the hallway behind the pharmacy to let him in. He's Italian, approximately 25 years old and speaks broken english.

He has a problem with talking too much, interrupting people's work and not getting his work done in a timely manner. You literally HAVE TO walk away while he is still talking to you. If not, you will still be there 20 minutes later looking for a way to politely end a conversation. He says things like "I wear cologne today and shave to make girls say aaaahhhhh he look good today". Also "I have sense of humor, right? You not need to be afraid of me".

A few weeks back I was letting him in the restroom. The door is really heavy so I was holding it open so that he could get his mop bucket rolled in. He turned around and said "High five"! I squeamishly put my hand up, so I didn't rudely leave him hanging, and he grabbed it and pulled me in the bathroom! I must have looked horrified because he let go and started in on another rendition of "I am funny, see? I have sense of humor". I left him in the dust and walked quickly back to the pharmacy.

So, last week I decided I'd had enough of the itchy wig and wore a baseball cap to work instead. When the Italian janitor came to the pharmacy, a new intern, who doesn't know yet how to duck when he comes around volunteered to let him in the bathroom to clean. Later, on my break I passed him in a hallway and acted like I didn't see him. He yelled after me, "Are you lady that works in Pharmacy"? I was caught, and turned halfway around. "Yes", I replied. He was puzzled and said "You not recognize me"? I grunted and tried to keep moving. Then he said "You look very different". "You shave head"? I didn't want prolong the converstation so I said yes. Then he dropped the truth bomb. "You much prettier woman before". "Before you look like woman, now you look like girl, or boy".

Ha ha! He's right, but jeez!

Here's me today, 8 weeks post chemo, with my wig and without it.

Six Months Since

2008-05-23T10:52:00.000-07:00

Six months ago today I came home from the hospital after bi-lateral mastectomy and oophorectomy surgeries. A couple weeks later I started chemotherapy. And I was scared to death.

Today things are much different. You have probably noticed I don't write much these days. There's not much to write about other than good things! Funny thing is it doesn't occur to me to sit down at the computer to write about good news. Writing has been what I've done over the past few months when I felt overanxious.

As far as my body is concerned I have only a few complaints. Joint pain, a common Femara side effect, continues. Especially in my hips and knees. The left side of my chest, on the side, under my armpit has pulsing pain every minute or so. Sort of a burning and stinging feeling. Its not strong enough to wake me at night though. My theory is that some nerve healing is going on. I do not feel a lump there so I am not worried about it.

My hair continues to grow. This makes me happy. I would describe it as thickening fuzz now. Not quite as long as a very short crew cut. Have you seen Robin Roberts from Good Morning America recently? She's stopped wearing her wig and I think she looks great. I think that my hair will be about the length her's is now, by early August. I can see myself feeling comfortable wearing my hair that short in public.

I got hit by fatigue yesterday and took a 3 hour nap in the afternoon and then slept soundly all night. For a few days prior I noticed my legs felt increasingly tired, especially after walking up a flight of stairs. Just one week prior I was energetic and able to run 5 miles at a time without fatigue. When I feel this fatigue I also notice a strange feeling when stretching my quadriceps (kneeling down, sitting on my feet and leaning back). Instead of the feeling of stretching I feel fatigue in the muscle. I'd like to know why that is.

Work is going well now. I really look forward to going to work each day. How lucky am I?

Wear Sunscreen

2008-05-20T21:03:00.001-07:00

I'm passing on this link to a powerful blog written by a young gal named Sarah. Read it, it will break your heart. But it just may convince you to take better care of yourself. You deserve that.

Sarah's Blog

Detached

2008-05-16T21:33:00.000-07:00

My perspective is still skewed. My new normal I guess. Several times a day I find myself holding back from really engaging in life. It all still feels so temporary to me. As if the return to normalcy that I am experiencing now could be pulled out from under me at any moment.

I've let myself imagine, only once or twice since finishing chemo, finding evidence of disease in my body. A small lump in my chest or under my arm or in my neck. The ominous feeling of "knowing" it's bad news feels like heartburn in my chest and fear rises up from my stomach into my throat.

You see, I keep a part of me protected from this dreaded experience by not letting hope seep all the way into my heart. This protected part of me would not be shell-shocked by horrific news, if it were to occur.

To Genava

2008-05-15T21:24:00.000-07:00

My friend is going through a very hard time. I want you to know Gen that you are a beautiful, unselfish, loyal person. I hope you realize how much you mean to me and all of the other countless people who are blessed have you in their lives. I believe that you will come out of the death you are dealing with now, stronger. Don't hesitate to call for help when you have doubt.

Love ya Gen

Do You Realize?

This song was written by the Flaming Lips for a friend who was dying of cancer. I think it applies to any sort of loss. The lyrics remind us that life is short and its hard to make the good times last. Its most important to let people you love know that they bring joy and meaning to your life. The sun doesn't really go down, its just an illusion we believe for now. Things will get better.

Counting Hairs

2008-05-13T22:46:00.000-07:00

I've counted em. Only 3 left on the right and 5 left on the left. My eyelashes that is. WTF? This happens now? Six weeks AFTER finishing chemo? I remarked to John tonight that I look more like a chemo patient now than I did during treatment. He responded saying he didn't think so. I have color in my face now. I've also gained 4 pounds which fills out my face. I feel much better now too.

I am so much less self-conscious now of my hairless state so its a blessing that this didn't happen earlier.

I forget that I still look alot different than other people. I was in McDonalds last week having breakfast by myself. I was wearing a beanie hat, eating and reading a book called Pretty Is What Changes. Its such a good book (thank you Shar!). Halfway through my breakfast a young gal who was washing tables came up to me, said hello and asked me what I was reading. I told her the title and that it was a book about breast cancer. She responded asking "Is that what you have?". It was so sweet, the way she asked. I was taken aback by how empathetic and sincere she was. I told her yes, that I had breast cancer. She stopped her work and looked me right in the eye and said, I hope things turn out okay for you and you get well again. It felt so good to hear those kind caring words from a stranger.

I'm Ordering This T-Shirt

2008-05-08T18:52:00.000-07:00

My Crutch

2008-05-08T07:48:00.000-07:00

Its time I come clean. Not only have I had unwavering support from family and friends through my cancer ordeal but I have also kept a fragile emotional state in check by taking antidepressants.

I started taking them several weeks after diagnosis. I take Lexapro in the morning and Trazodone just before bed. These wonderful medications have given me a fresh new perspective each day and the ability to sleep soundly every night. I think that without Lexapro I would have fallen prey to deep depression. I needed something to help with paralyzing fear and a steady decline in my ability to cope. I did not get much sleep during the nights before starting Trazodone. Thats when my terror-filled thoughts were at their most extreme.

I think I'm ready to taper off using the medications and learn to deal with fear on my own. I'm halfing my Lexapro dose as a start. I suspect you'll be reading more posts about fear and uncertainty as I begin dealing with life without crutches.

Red Wine & Breast Cancer Recurrence

2008-05-07T18:05:00.001-07:00

While perusing the breastcancer.org website today I found some good news. Its good news for me because I like to drink a glass or two of red wine before dinner. All I have ever hear prior to today was that red wine causes up to a 20% increase in the risk for cancer. So I have felt guilty for every glass I've raised since being diagnosed.

An interview on breastcancer.org answers questions on the subject of red wine consumption and breast cancer. There have been no studies show an increased risk of breast cancer recurrence for moderate red wine drinkers. Also on the good news front, there is scientific evidence that a phytochemical in grape skins (which is contained in red wine) inhibits aromatase, which lowers a woman's estrogen level. This is good news for estrogen-driven cancer like mine. In fact, I take a drug called Femara, to the tune of $350 dollars per month, that inhibits aromatase on a much stronger level.

Cheers! Drinking a little red wine actually starves estrogen lovin' cancer cells.

Laurie

Intriguing Article On Fasting and Chemotherapy

2008-05-03T20:25:00.000-07:00

I really wish I had seen this article before I started chemo. I would have tried fasting prior to chemo treatments.

Excerpt from the article

Starving mice for a few days before chemotherapy treatments protected their healthy cells from damaging side effects, offering a possible way to shield cancer patients from the debilitating hair loss, nausea and anemia that now plagues the treatments, researchers reported Tuesday.

The study, published in Proceedings of the National Academy of Sciences, could also allow the use of more potent chemotherapy doses without endangering patients.

Read the entire article here
http://www.latimes.com/news/science/la-sci-starve5apr05,0,6821595.story

State Of The Body Address

2008-05-01T09:31:00.000-07:00

Taking stock of my body this morning I must say things are looking up. My energy level, while still affected by overdoing it some days, is gradually stepping up. My nose has stopped its bleeding completely. Five months after bi-lateral mastectomy/lymph node removal surgery, nerve healing is still going on in my chest made evident by periodic sharp burning pains under the incisions. Strangley, the pains happen most often where nipples used to be. Where lymph nodes were removed under my left arm there is growing stiffness from scar tissue. When I lift my left arm into the air I see and feel a string of muscle that goes from my armpit up to my elbow. It needs to be stretched, but it hurts, so I don't stretch it like I should. My chest still feels really tight which I've noticed causes me to cave in my chest a little so that I don't feel the tightness so much. I've been trying to push my shoulders back to stretch that area.

I am feeling the side effects of Femara which is an aromatase inhibitor. Femara keeps estrogen from being produced by my body. This causes joint pain which I feel in my hips, knees and sternum. At first I thought the joint pain was from working out. But I have been lazy when it comes to exercising and the joint pain is getting more pronounced. I really notice it in the morning.

Chemo and the lack of estrogen has taken its toll on my skin. It has less elastisicity which is most apparent around my eyes. The area above my eyes has sort of a hooded look now and the skin below my eyes has more crinkles.

Four weeks out from chemo, my hair is coming in pretty well on my head. I have a bald spot on the front center crown area because of wearing a tight wig and hats. I have a rather large head so this area has constant pressure and rubbing happening there. I talked with the HR director at Target yesterday about wearing a hat to work rather than my wig. She said no problem. I just need to order a Target bullseye baseball cap. This will make me much more comfortable. I've had enough of wearing a wig.

This concludes my State of the Body Address. Good luck and God bless America.

Heh heh.

The Foreigner

2008-04-29T19:14:00.000-07:00

I had an hour to waste this afternoon before picking Tanner up from school so I went downtown and stopped in at Break Espresso to escape the rain storm. Sitting there with my cup of peppermint tea, I couldn't concentrate on the book I was attempting to read. The last time I was in Break Espresso was for a business meeting with a client roughly a year ago.

I studied people as they came to the counter to order their drink. I was trying to imagine what was on their mind at that moment. No doubt some of them were having a happy go-lucky day, just going with the flow. A larger number were likely hoping for a respite from the boredom or stress of a typical work day. I found myself getting jealous and feeling something close to resentment toward the happy smiling people. Thinking that they were lucky to not have a black cloud of uncertainty following them. They have the luxury of feeling carefree. These feelings surprised me. I hadn't felt them before in relation the cancer.

I think I was struck with the feelings today because I haven't ventured out to public places much since I was diagnosed. And, its easier to feel jealous of strangers when I am unaware of the troubles following them.

I felt like a foreigner. This type of establishment used to be my stomping ground. A year ago, I worked and lunched downtown daily. I was preoccupied with work issues the majority of my waking hours.

Quitting my job and dealing with cancer has dramatically changed my thoughts and frame of reference. While I wish to be happy go-lucky again, to be truthful, I hadn't been that way for a long time. Not since my college days. Thats why my feelings of jealousy and resentment today were not legitmate and temporary. Those people I watched today were likely carrying a heavier load than me. I would not choose to go back to the state of consciousness that most people live in. The state of constant preoccupation with things that might happen to them. The thinly concealed unease of not doing enough, not working hard enough to assure success and security. The feelings of guilt for wanting to take some time just for yourself for an uninterrupted thought. To appreciate a simple pleasure, like silence, which is better than anything you can buy at a coffee store. To be calm enough to enjoy your family in the evening, rather than spending that valuable time escaping into the numbness of t.v. only to feel guilt later.

Going through a traumatic event pushed me into this unusual, often blissful state that is foreign to so many.

An Understanding

2008-04-26T22:44:00.000-07:00

I fell asleep on the couch friday afternoon. I was troubled before I feel asleep. My mind kept pulling at me to return to an old way of thinking. I had given up this way of thinking when grappling with the cancer diagnosis. Dreaming of the future when time would be plentiful each day to do fulfilling things. A time when stress would be low because I'd finished working and was enjoying the fruits of a lifetime of labor. With this old way of thinking, with a false sense of safety, this restful time was going to come. I just needed to keep working hard and wait.

Lying on the couch, I was sad. I had been dreaming the dream for a few seconds (often I dream of John and I driving somewhere in a convertible with the top down enjoying the sunshine). Then, when I remembered that there is no guarantee that this dream will happen and I stifled the dream.

I forced myself to focus on the moment. Although friday was unseasonably cold, it was blowing and snowing outside, there I was comfortably warm under a blanket on the couch enjoying the silence, with a purring cat next to me.

Dreaming is normal. But we delude ourselves thinking that the future we are dreaming of is guaranteed. We can't keep accidents from happening. We can't stop nature from taking its course with our physical bodies.

I've realized that a false sense of safety gives the conscious mind comfort but on a deeper level we know that we do not have control over keeping bad things from happening. Deep down we know that bad things will happen to all of us. We will all lose people we love. We will all one day get sick and die. Not letting ourselves accept reality makes us more scared than we need to be.

If we can accept that these things will happen to all of us, and openly discuss it, I think we will diminish the power that fear has over us. This has been true for me. By accepting that I do not have control, my fear is diminishing. However I still have fearful moments. And my mind still wants to bathe itself with dreams and a false sense of safety.

When I woke from my nap I felt at peace. I think that each time I force myself to focus on the moment, and feel thankful for all that I have at that moment, I chip away at the fear.

Tough Day

2008-04-24T21:34:00.000-07:00

I end the day today feeling inadequate and disapointed in myself. Its because of my performance at work today. I allow myself to become intimidated and when that happens I cannot think clearly and my performance goes down hill. I rush to appear competent and make mistakes. Doing an entry level job. Its so embarrasing. My inclination is to think that I am simply stupid. Its easy to go there. Another incliniation is to blame it on the stress of the last few months or on the effects of chemo. That's also easy.

Tomorrow is an opportunity to try again. I wrote recently that its easier to feel happy these days. What I didn't mention is that the bottom falls out easier these days also. I trust that I will feel better about things tomorrow.

Underneath there's a worry. Today would have been a chemo day had treatments continued. I felt relief this morning knowing I didn't have to go to the clinic for a treatment. I also feel a little bit lost. A little bit scared. Does it mean that any remaining cancer cells have free reign now? Are there some in my body? Are there chemo-resistant cells there. No one can tell me for sure. When you know for sure is that when a mass reaches about 8 million cells it can be seen by imaging or can be felt. With fast growing cancer that may be within the next 2 years, if it happens at all. Am I a glass half empty type of person thinking this way? No, I don't think so. I think all cancer patients worry about recurrence. If I had stayed naive and didn't research enough to know the high rate of recurrence, I might have saved myself some worry.

Aaaaaaahhh I am going to bed. This is not a good train of thought. I will be able to shut it out of my mind and go to sleep. Dear family, please don't worry. I am really doing okay. This is where I can write about my fears and then let them go. Good night all.

Its So Easy To Talk About

2008-04-23T19:54:00.000-07:00

I worked today with a relief pharmacist who was filling for one of our pharmacists who is out of town. I used to live across the street from her. When I arrived she took a look at me and said "why do you look so familiar?". I am used to this. People who I have not seen recently do not recognize me with my wig on. After laughing and telling her who I am and how she knows me we set in doing the morning refills.

I was so close to telling her why I was wearing the silly looking wig. I mean, the wig is so obviously not my hair. Then I thought, a cancer diagnosis is not something you drop on someone who you are going to work 4 hours with. I could have told her though. Without the tinyest bit of emotion. Cancer is just what happened to me. My appropriate conversation filter is barely functioning. Things are so comparatively good for me right now that talking about cancer feels like any other sort of news that you relay to bring a former neighbor up to date.

I also find myself talking with my coworkers about things like understanding those who visit our pharmacy who struggle to keep anger in check. People who are in pain, feel powerless or hopeless, sometimes show anger and frustration with very little cause. They are crying out for attention and respect. I understand where they are coming from. I feel like I can see right through their outward emotions. Being the recipent of their anger upsets me deeply, but in a different way than before I got sick. Rather than feeling reciprocal anger I feel sorry for them and that I have failed them.

I've had very little practice telling people about what's happened to me. I'm not sure what the appropriate way to tell people is. I guess I'll figure that out.

Since anxiety and depression lifted after treatment ended, I go for hours at a time without thinking about cancer. It was just a few weeks ago that I was very concerned about letting myself feel hopeful, when bad news could appear again at any time. However hope happened without any effort on my part.

The thing is, for the next several months while I am growing hair, its pretty outwardly obvious that I've been through chemo. If people ask me whats up I will likely be blunt and come out with it.

Back in Time

2008-04-22T18:18:00.000-07:00

I came across my baby picture in some old photos. I wanted to see how much resemblence there was between then and now. Glad I grew into my head. There's hope for Tanner now too.

New Growth

2008-04-21T19:15:00.000-07:00

Its unmistakeable. New hair is growing. Its about 1/8th inch long. I toasted this new growth with my cat Ringo. He purred. He's good company.

John, Tanner and Quinn are in Florida having a great time at Disney World with his sister Donna and her two sons Felix and Mikesh. In a few days they will join with John's folks John and Shar in Naples. I am so happy that they are there. And I miss them.

John tells me that Tanner is being a gentleman on the trip. That makes me happy. There is nothing more important to me than my boy showing good manners and thankfulness for what he is given. The Brownell family has whole-heartedly accepted Tanner and I into the family. I miss them and wish I were there.

John's mom Shar is a kick in the pants. She shares Tanner's and my interest in gourmet cooking. She is the life and the glue of the family. And she loves to have fun. She throws unbelievable parties at their home in Troy Michigan. Long time friends flock to their parties. Its a testament to John and Shar's loyalty to their friends and family. John's dad is successful, quiet and thoughtful. I hang on each word that he says. My wish is to listen to him for an entire day. It doesn't matter what he talks about. I long to know his story.

John's sister Donna has a wonderful smile and a warmness about her that draws you to her. She is real. I look forward to spending more time with her and her wonderful family.

John's sister Laura takes after her mother. She is sweet, fun and opinionated. And she is smart. She lives her life on her terms and I respect her for that. I can't wait to see her and her family again.

I miss John. The house is quiet. I have been listening to this song called Feelin' Steepled . Its John's most recent creation and not yet finished. I think it may be his best. I hope you enjoy the sneak preview.

Adversity Does A Favor

2008-04-20T19:41:00.000-07:00

Its easier to feel happy now than before I found out about the cancer. Coming face to face with despair changed the way I view myself. It gave me self worth.

I wonder, how many people would stop punishing themselves if they were given the chance to endure what they didn't think they could? Would they understand their value to others when the struggle ceases? Could they see the relief in their loved-ones eyes? Would they accept that they don't need to cover up their self-perceived flaws any longer? Would they understand that being themself is truely enough?

I don't wish hardship on anyone. I see others though who are a victim of hatred turned inward. All they know to do is bury their undeserved and unfounded shame by self-medicating. Some people overwork themselves to temporarily drown out the internal negative thoughts. Others hide away so as not to burden anyone. Too often alcohol or drugs are depended on to feel relief. Cancer pushed me down and through the difficult transformation from self-loathing to contentment. I wish that I could help others through.

I'm Going to Retreat

2008-04-17T20:11:00.000-07:00

I am so excited. I found a retreat to go to in August in Colorado. Its a 6 day retreat focusing on cancer recovery, meditation, healing visualization practice, yoga sessions, whole-being healthcare and nutrition tips, small group discussions and art therapy.

I have become a firm believer in Yoga. During some of my most anxious days I was able to feel a sense of calmness after a 45 min yoga session. Yoga also gave me a way to exercise even when I was feeling dizzy, weak and lousy. I'm looking forward to the healing visualization also. I had a breakthrough early on after my diagnosis, during a guided visualization session.

Check it out. I am happy that its affordable too.

http://www.shambhalamountain.org/programs/864

Looking Good

2008-04-17T12:25:00.000-07:00

My chest xray is clear. The bone scan that I had done was looking for signs of osteoporosis and that came back showing no signs of thinning bones in my spine and hips. So, Laurie won't be seeing a doctor for 2 and a half months. Wow

Hey, anyone want to run a little race with me? I think I have convinced John, my sister-in-law Renell, sister Anne to run. Its the 5 K race for the cure in Helena on May 17th. My dear ex sister-in-law Jody lives in Helena and told me about the race.

Bruce? Hank? Here's a reason to break out the running shoes. You know you want to. Heck, if John can do it......

Leave me a comment if you are interested. We'll carpool over. Perhaps visit the Blackfoot River Brewery for a cold brew and lunch afterwards.

Incredible Lyricists

2008-04-15T15:54:00.000-07:00

I live with song writers. My 7 year old step-son Quinn has an imagination that allows him to visualize and visit other worlds. In this song he describes The River Of Time where if you jump in you can swim around and explore the whole place, but in the real world only your skull remains. John created a video for the song. Keep in mind that a 7 year wrote the lyrics and rapped the song. You'll be amazed.

http://blog.unpopularguy.com/2008/04/quinn-everett-river-of-time.aspx

Overcoming Depression

2008-04-14T15:39:00.000-07:00

I am just realizing now how depressed I was. I'm not referring to moods and reactions that would be expected of a cancer patient. Those, when they occured, were easy for me to link to my cancer diagnosis.

What I didn't realize was happening was I became unable to overcome increasing malaise during the last two months.

The progression of the decline of strength (both physical and mental) that occurs when you undergo 6 treatments of high-dose chemotherapy becomes grueling somewhere around the 3rd treatment. One oncologist told us in an initital meeting that chemotherapy nausea is comparable to pregnancy morning sickness. Everything else that occurs is not comparable.

My inability to view chemo as anything other than poison put me at a disadvantage. The nose bleeds and bloody bowel movements after the last two treatments were evidence that my poor body was no longer able to cope with the poison. It depressed me to see the condition of my body decline.

With the end of the poisoning I was able to return to doing good things for my body. Eat nutritious food. Rest, and wait for recovery. The depression lifted. Its a new world for me now.

Impossible Girl

2008-04-09T20:11:00.000-07:00

A new song. Written, sung, played and recorded by John. He continually amazes me. Check it out.

Hope Happens

2008-04-09T09:47:00.000-07:00

I assumed I'd need to suppress my fears and put forth effort to feel hopeful about the future. I was mistaken.

Hope quietly snuck in.

A smile is effortless today. My self-protective suppression of hope, which was essential during treatment, when I couldn't see beyond a few days, feels unnecessary today.

I am calm. And thankful. That is enough.

Life Simplified

2008-04-08T15:53:00.000-07:00

Woke today to no nausea. Its all done. Not very fatigued either. I'm putting this last treatment in the book and shutting it.

Dropped by the hospital after work for a bone scan and chest xray today. My ever-diligent oncologist is keeping a good eye on me. I think I'm supposed to start Femara now. Gotta call and check on that minor detail. My cancer is estrogen driven and Femara will reduce my already very low estrogen level even further. Women's body fat produces estrogen and Femara should put the keibash on that.

So, as long as the scan and xray are clear I do not have any doctor appointments for 3 months! Sounds great to me.

Best Party Ever

2008-04-07T13:51:00.000-07:00

Thursday after chemo some friends came over and Wii had a great time. I'll introduce each of them in their finest moment....

ex-coworker Hank the baby-slayer

ex-coworker Kevin and wife Karla winners of the most well behaved award A little disapointed in you two. However you will be the first invited back.

ex-coworker Bruce Rock Band vocals award - best effort

friend Toni Rock Band guitar award - least improved

husband John Wii tennis award - most threatening player

friend Andi Wii tennis award - least threatening player

friend Ian Rock Band guitar award - most creative

representing the Bender family ZALE! Wii maestro

me party participant award - most stoned

Heh Heh. Thanks for coming out and celebrating with us!

Completion

2008-04-06T18:16:00.000-07:00

Surrounded by the devotion and support of my family I finished chemo. I was never alone and that made all the difference. Thank you, John, for loving me through this with steadfast compassion. I know that you would have endured it for me if you could. Thank you for listening, giving encouragement and holding me up. Dad, thank you for your loving support. Obligations in Kalispell made it difficult for you to make the repeat trips to Missoula and yet you did anyway. You've helped in so many ways, but what impacted me the most was knowing that I am fortunate enough to have a father whose hug makes me feel safe and who would do anything to protect me. Mom, you gave of yourself so often with a smile. Having you with us helped make treatment days like a nice get-together. Staying for a few days afterwards and taking over the cooking, shopping and cleaning allowed me relax and recover in peace. Anne, you've been there for me whenever I've needed a talk, walk or pity party. You and Chuck reassured me many times that I could relax about how I look, and I truely believed you! Thanks for listening to me and holding my hand during needle sticks. I wish I were as brave as you but I don't think I'll ever quite get there. Mark and Renell, the weekly cards and phone calls with prayers and words of encouragment meant so much to me. Having you there for my second-to-last chemo was a treat. I was thrilled to show off my brother to my friends at the clinic.

To my far-flung family and friends all around the world, thank you for your gifts and cards that arrived to make me smile and warm my heart.

Treasure

2008-04-02T16:13:00.000-07:00

Take a listen to one of my Christmas presents from John. I mentioned being overcome with emotion when John played it on Christmas Eve in a previous post.
It's a sunny tear jerker. Not many singer/song writers can pull that off but my sweet, insanely talented husband can. He sings and plays all instrumental parts.

And in the middle of the darkest days
When the light in your eyes starts to fade
and "hope" is just a word people say
When you feel like you have gone astray
I hope that I can take it all away
And do for you what you have done for me

A Celebration Is In Order

2008-04-01T16:27:00.000-07:00

Thursday is my last chemo. Can you believe it? I sure can't. I really can't. I need to be convinced of the fact.

Thursday after chemo some friends and family are coming over to celebrate, which should help cement the idea in my head. If asked to pinch me just do it, and pinch me hard!

I am literally quivering right night with excitement and nerves. I'm having a glass of red wine to settle down a bit. I was nervous all day today at work too. Took a run with my sis after work which helped some, but the nervousness has returned. I usually don't free-form blog posts like this but my mind is scattered and bouncing all over the place so I'm just going for it.

Its been a traumatic 5 months. To say the least. Maybe the culmination on thursday is just too much for me to process right now. I might embarrass myself on thursday with emotions that I've not allowed myself to feel. I'm frightened. I'm scared to hear if my cancer markers have continued to rise. I'm scared to have the bone scan and CT scan. I'm scared to hear that everything is fine and that I am on my own to do self exams of my chest and lymph nodes for however long until my next checkup. AAAACCCK! I think I need a shrink!

I need something to focus on and look forward to. When I think about a place to shed my protective cancer shell I think of snorkeling in Tulum Mexico. I want to go there and cry and scream and laugh out loud until people think I am crazy. I want to scream on the beach and let some anger out. I am angry that this has happened. I am angry that I've put John, Tanner and the rest of my family through this. I am angry that it might not end here and I might hurt my family more. I might not be done with this and nothing will ever be the same.

Welcome to Target Pharmacy How Can I Help You?

2008-04-01T07:35:00.000-07:00

I look forward to going to work. Here are a couple of my coworkers. They are really kind, fun and smart as hell. You should bring your prescriptions to us! The pharmacy is brand new. Its very roomy, bright and efficient.
I love having strict rules to follow. If you do your job right, everyone ends up happy. The toughest part of my old job, managing software projects, was the difficulty in pleasing the customer while at the same time keeping the project on time and on budget. This is not possible the majority of the time with software projects. Software project management ends up being primarily conflict management.

Shift to later in the evening last night. Tanner made us a sensational dinner of lasagne and garlic toast. Pretty mundane stuff to post about. Aren't I fortunate? Mundane is underrated. Hope your day is mundane too.

Sunday Funnies

2008-03-30T11:48:00.000-07:00

Who doesn't like the Sunday funnies. They're in color and start your Sunday off in a good way. With a few giggles.

I had a great laugh yesterday morning. It was early and I had just crawled out of bed. It would be some time before the swelling under my eyes would subside. After brushing my teeth I pulled off my sleeping hat and the image that greeted me in the mirror was a smiling, good-natured grandpa who was very happy to have some company and beared a striking resemblance to me. The remaining hair on his balding head stuck up in a hilarious halo around his head. The wisps he uses for his comb-over were not paying attention to gravity either. And thats when the funny thought hit me. I'm my own Grandpa.

I hope you enjoy the visual as much as I did. Take a listen to the humorous song too. I apologize in advance if it remains in your head for the rest of the day.

I'm My Own Grandpa

Amy

2008-03-28T20:03:00.000-07:00

This post is dedicated to my best friend Amy. The kind of friend you meet young, in our case the summer before 6th grade, and live next door to until you leave for college. She knows me as well as any one on earth. After years of not being in touch we can pick up the phone and talk as easily as if we had spoken the day before. Amy is petite and blushes. Her smile and sweet disposition made her popular with all social classes in school. She was smart and the cutest cheerleader on the squad.
The boys absolutely loved her. When we were sophomores in high school she had the most popular seniors falling all over themselves to be her boyfriend. And I was lucky enough to have her as my best friend.

Amy was diagnosed with breast cancer early fall of 07, a month or so before I was diagnosed. I remember the shock when I heard about her diagnosis and upcoming mastectomy and chemotherapy. In disbelief, I could not stop thinking about Amy and felt fear for her and what laid ahead. I couldn't imagine the world without her. Memories flooded into my mind of growing up together. She was the more outgoing of the two of us. She always included me in her plans and I depended on her graciousness when I was too selfconscious to invite myself along. We spent countless long summer days suntanning at the lake. Waitressing together at the Schoolhouse resturant on Flathead lake. Summer nights cruising mainstreet singing along to the Grease soundtrack. Sneaking out of slumber parties to roam the neighborhood until the wee hours of the morning. Doing backbends on the hill between our houses. Learning how to drive and putting dents in both ends of the station wagon perfecting our parallel parking skills. Looping a string between our house's decks so that we could write notes about what we were wearing to school the next day for the other to pull across and read.

Amy is married and has three beautiful, athletic girls. She was about a month ahead of me throughout our simultaneous treatment for cancer. When she was recovering from surgery and apprehensive about beginning chemo she unknowingly made me feel better about my diagnosis by forging ahead with bravery and a positive attitude. The carved courage angel she sent to me gave me courage when I badly needed it. A best friend knows what you need. I will treasure it forever.

Who could ever have guessed that we would be sharing such a journey, a sisterhood that neither of us would have chosen and that binds us now in ways that only those who have shared in it can really understand. Amy's last chemo treatment was March 5th. Congratulations Amy. I love you and miss you and am so proud of you.

Hope and Trust

2008-03-28T07:24:00.000-07:00

It feels much safer for me to stay on the ledge rather than take hold of the rope and allow myself to be pulled up toward trust and hope that cancer won't return.

It was a terrifying fall. I was running along a beautiful mountain trail feeling healthy and free. Not paying attention, not being aware that at any time I could lose my footing. When the fall happened, everything was a blur. I kept dropping and dropping through shock and harrowing fear, finally landing on a small ledge. Many times I have allowed myself to peek over the edge and see how much further I could fall.

I have also glanced up to see blue sky and rescuers offering a way up and out of my solitude. But leaving my ledge, which I have managed to make relatively comfortable, takes bravery. If I allow myself to be pulled up, to join the people waiting for me at the top, then I risk another fall. My mind reasons that it would hurt much less to fall to the bottom of the gorge from my ledge than to fall from the ridge above.

It takes alot to wrap your mind around the fact that you have cancer. I think it will also take alot to wrap my mind around not having cancer.

I Can't Wait

2008-03-27T08:13:00.000-07:00

I am obsessed with hair. I can't wait to start growing it. I figure in about 3 weeks I'll see evidence of some new growth. How we take hair for granted. It will feel so freeing not to have a crazy itchy wig or snug hat on my head. My hat slips off sometimes when I am sleeping and it feels so good to wake up and feel my scalp breathe.

Its probably difficult to understand. I miss blow drying and styling my hair. It took time, sure, but it also made me feel "fixed up" and ready to start the day. My morning routine is much different now. Get out of the bath or shower. The little hair I have is dry by the time I reach the mirror. Throw on a hat and a little makeup and I am ready to go. No quiet prep time to think about whats in store for the day.

I've been lucky to keep about 50% of my eyelashes and eyebrows. I dreaded losing them as much as my hair. Of the 5 hairs per square inch that I have on my head now, the long ones remaining are all brown. The gray ones have all fallen out.

By fall I will have a cute short pixie do. I wonder if my hair will grow in curly. That would be fine by me.

Chemo Brain

2008-03-25T22:41:00.000-07:00

Its hard to take finals when you have chemo brain. Its difficult to start a new job when you have chemo brain. Here's Mayo Clinic's description of one's own personal preview of dementia.

For God's sake I have twenty years of experience, of learning, of conquering each task put before me. But with a fresh onslaught of chemo brain you can't trust that you will remember anything. Then if you're like me, you learn quickly how embarrasing it is and you break into a cold sweat thinking about when it will strike next. You can't blame your slowness on chemo brain to your new coworkers. You have to swallow your pride and ask them for help again.

I have learned humility through this experience. Had no other choice. I wanted to succeed because I really like doing something new. I don't know how long I will be satisfied doing this job and who knows where it will lead. Probably back into the IT world, using acquired knowledge about pharmacy workflow and software to leverage a position in a hospital. I will surely gravitate back to more responsibility at work. But for now, for the rest of this year at least, I'll enjoy learning from some really cool pharmacists.

Fog Lifted

2008-03-25T08:16:00.000-07:00

Work is going better. I don't have the brain fuzzies like last week when I was trying to appear competent at my new job. I've got 10 glorious days of feeling relatively normal before chemo #6. I have been lazy of late. During recoveries from prior treatments I've pushed myself to get out and jog by now. This time, instead, I've taken walks or naps.

I'm really loving Yoga. Had to get through the first few sessions where stretching did not feel good. Now, I'm getting stronger all over. My flexibility and balance is better. Fewer headaches too. Its also helping stretch out scar issue under my left arm that developed from surgery to remove lymph nodes. The most important benefit, deep breathing and relaxation, surely helps my system recover from chemo.

I have thoughts about what I want to do after coming out of treatment. I want to see some new places and experience other cultures. I want to really live life to the fullest. It doesn't make sense to wait for "someday" when the timing is just perfect. The urge is strong. More on that when plans are in the making.

Just Say Om

2008-03-22T08:45:00.000-07:00

My announcement came at dinner time. "Guess what guys, we have plans for tonight!" John and Tanner responded with looks of mild interest. "You are going to learn Yoga!" They laughed and went back to their conversation. I interrupted again a few moments later to let them know they would have a half hour after dinner to get changed into suitable yoga gear and mentally prepare for their quest in search of Om.

After inserting the Yoga World DVD and convincing John of the high probability of beer spillage if he didn't forfeit his beer bottle, the guys stifled their giggles and settled into cross legged poses on the floor.

It appeared as if John was a born natural when he easily slipped into the Lotus pose. All & all it went remarkably well and I haven't laughed so hard in ages. No one was hurt when Downward Dog balance problems occured and there were frequent groans and complaints, which were not sympathized with. Only laughed at. John really got into rhythm when he realized that we didn't need to crane our necks up to see the tv screen in order to know when to change poses. The considerably loud sound of Tanner's knees cracking became our cue.

The guys endured the entire 45 minute DVD. You can see them here in the final pose, the Corpse pose, at which point they farted and fell asleep.

Stop By Sometime

2008-03-20T19:34:00.000-07:00

I've really been slacking on blog entries. I started working four
l o n g hours a day at my new job this week. I leave Target frazzled and drained each day. Monday was tough. After being on my feet for a couple of hours focusing on learning the pharmacy software I literally HAD to excuse myself and sit down. My vision had grown blurry and my legs were shaking and I felt panicky. ICK, I hate that feeling, it felt like low blood sugar. After sitting down, eating and drinking for 15 mins I was back on my feet but I had a hard time recalling what I'd just learned. Oh well. My boss knows I'd just had a treatment a few days prior and she is a pharmacist afterall, so she knows about its side effects.

I've been successful at reminding myself to just take it slow and be extremely careful. I check each prescription three times before handing it off to the pharmacist for a final check. I would never forgive myself if I made a medication error and someone was hurt by my error.

So, stop by Target if you are in the neighborhood and wave hello. I probably can't stop and talk but I'd love to see you. My shift is 11 - 3 for the next two weeks.

Speaking of two weeks. TWO WEEKS FROM TODAY IS MY LAST CHEMO! ya ba da ba dooooooooo

Subconscious Manipulation

2008-03-18T08:58:00.000-07:00

I came across my surgical pathology report about a week ago while organizing my desk. I read it with interest as I had not looked at it since before the first of the year. Since then I've become familiar with some of the terminology used in pathology reports.

One of the measurements (mitoses), used in grading cancer, is the number of cancerous cells that are dividing when viewed under a high power microscope. We have known from the beginning that my cancer was rated as high for mitosis count. But this time I was taken aback by how high the number is. This lead me on an obsessive online search through medical articles and books for another example where the mitosis count was as high. I wanted reassurance that the mitosis rate was not all that unusual and that we aren't dealing with an uncontrollable force. Unfortunately what I found was documentation that made me much more concerned rather than less. Still, there was fragile underlying comfort in knowing that I am not a scientist and that I might be misinterpreting what I read.

I allowed myself to go down the effortless road of pessimism and selfishness. Looking back now, I think I was also looking for drama so that I could manipulate my loved ones into giving me attention.

After chemo last thursday Dr. Schmidt took me in to an examining room, gave me an exam and told me that a cancer marker had been steadily increasing over the past four blood tests to the point where it was a bit of a concern. She also stated that she did not find any evidence of disease in my lymph nodes and chest during the exam. She went on to say that 1/3rd of the time the increased cancer marker is a false positive caused by chemo treatment. When I told her that I was not surprised, that I have been consciously reminding myself not to rest easy and to assume that the cancer will reoccur in order to avoid being blind-sided with bad news, she grew concerned. She suggested I schedule another guided imagery session. She also decided to schedule a CT and bone scan for a couple weeks from now to look closer for evidence of disease in other parts of my body.

My brother, sister and nephew Jareth were in the chemo room when I came out and in my excitement in seeing Jareth and the wonderful company of my siblings put all thoughts of the discussion in the exam room out of my mind. My mom arrived the next morning and I happily climbed into a cocoon where nothing is expected of me and my every need is attended to, for the next two days. I slept as much as I needed while mom, once again, unselfishly worked to make our home the haven that it is. John, my ever-understanding and devoted husband kept up his arduous mission of supporting us while caring for me and the kids.

Steroid withdrawl had its normal affect on me Sunday. Pessimism and anxiety came in waves throughout the day. Several times I wanted to break down and heave my fears and anxieties onto John. At other times though, I recognized that my thoughts were extreme and wanted to protect him from them. He is so perceptive though. He encouraged me to let it all out and after not much convincing I did.

I told him that I feared my prognosis was bad and more suffering was only a matter of time. I let him know about my obsessive search for reassurance. I talked about the cancer marker news.

John bravely took on the heavy and difficult job of understanding, reassuring me that my thoughts were not, as I had labeled them, “crazy” and acknowledging the facts that we’ve known all along. But most importantly pointing out that letting myself buckle under thoughts that I inflated would take away time that I could be experiencing joy and contentment. We all have a limited amount of time to enjoy life. I am no different in that respect than any of you.

He is one of those wise people who keep a sense of humor and is pleasant and giving through the toughest of situations. When he is stressed from the frustrations of life he seeks out humor rather than pitying himself. I have learned so much from him and could not have a better partner to get through this with. Thank you sweetheart for bringing me back once again. I am optimistic today and feel no fear.

Onward

2008-03-17T07:52:00.000-07:00

One more treatment. We've almost reached the summit. Thank you for accompanying me on an ascent that no one chooses to take. I wish I were courageous enough to look at the view of the top. Does it look pretty? Is the sun shining up there? Will there be a refuge where we feel safe and can breathe easy?

I am in need of a guide. Someone who can help me find sanctuary when this journey ends. I will get the help I need. For today though I will sleep.

Back Home

2008-03-13T17:45:00.001-07:00

I'm beginning to feel at home in the chemo room. Especially when I have my brother and sister with me.
My brother made us some I AM STRONG rubber bracelets. I love them, and him for doing this. He also gave me a XM radio receiver. Yaaa Hoooo. No more cassette tapes in the car for Laurie.
We got to sit by my favorite chemo pal today. She thinks our (mine and my siblings) eyes look alike and could tell we were siblings when we walked in the door. That was a first. I adore her and she is a bright star in what otherwise can be a gloomy room. She is my inspiration.

Chemo #5

2008-03-12T19:15:00.001-07:00

Another new development. My sister got the day off at work tomorrow so she is coming to chemo with my brother and I. Heck, I am almost excited for tomorrow. It will be great hanging out with my siblings all day. We are starting the day with breakfast at Pauls Pancake Parlor, then chemo appt at 10 and should be out of the clinic by 2-2:30.

My sister also surprised me with a hour long massage for saturday morning. What a sweetheart. She has done so much for me. A couple weeks ago when I was out taking my pharm tech cert test at the university, she came to our house and cleaned it from top to bottom. Is there nothing better than walking into your house greeted by freshly cleaned and vaccumed floors, bathrooms cleaned, dishes clean and laundry folded? I am so fortunate to have her as my little sis. She is always there to listen to my crazy thoughts without ever judging. She is the toughest person I know. I think she understands me in a way no one else does. I can tell her anything because I know how strong she is. She is heartbroken by all that has happened and I love her for her unwavering support.

I have high hopes that this chemo treatment and recovery will be uneventful. I'll try to post tomorrow night while I'm still high from the steroids.

Why I'm Doubtful I'll Die Of Something Else

2008-03-10T21:38:00.000-07:00

The following excerpt is from this article in Atlantic Magazine.

http://www.theatlantic.com/issues/96jun/cancer/cancer.htm

Only the most profoundly interested will have the time or interest to finish the article. It's long. This article does not make me any more frightened than I was before I read it. But it does a good job of explaining why people perceive breast cancer to be highly cureable now. And it is, for slow growing or moderately growing cancer. I have a "poorly differentiated" and fast growing cancer. Coupled with, or perhaps caused by, a genetic flaw called BRCA2 which causes an incapability to suppress the growth of cancerous cells. Cancer agressiveness is graded on a scale of 1 to 9. My tumor was graded 8. I have debated with myself about writing about recurrence here because of the effect it would have on my family. Its not my intent to scare people. I started this blog so that I could let go of repetitive thoughts. It also helps me make sense of them by periodically rereading my own blog entries. I considered starting another blog where I could write about stuff that I felt I shouldn't write about here. However I made the decision not to because this blog is about being real with myself and the people I love. I think that we as a society fear death because we don't allow ourselves to talk about it. Its not death that I fear, its uncontrolled suffering and the sadness that death leaves in its wake. I don't believe that I'll die any time soon. But I do believe that cancer will recur.

Breast cancer is as diverse as the breast itself, appearing in many different guises. Some cancers seem to erupt out of ordinary breast tissue with an awesome virulence, spreading rapidly throughout the body. When viewed under a microscope, the cells in these cancers almost always bear no resemblance to ordinary duct or lobule cells--they have lost all the specialized characteristics that differentiate cells in the breast from cells in other parts of the body. "Poorly differentiated" malignancies, as pathologists refer to them, are usually bad news, no matter what we bring to bear therapeutically.

Fortunately, these poorly differentiated, clinically virulent cancers are relatively uncommon. Much more often--perhaps in half of all breast-cancer cases--pathologists see malignancies that still bear some of the characteristics of normal breast tissue. These "moderately differentiated" tumors have a wide range of outcomes, though the prognosis for the patient is generally more favorable. A substantial number of women with moderately differentiated tumors will survive for years after treatment--even decades. In most cases these tumors evolve more slowly than their poorly differentiated cousins, probably taking years to become detectable. "Well-differentiated" tumors, a less common form, are more indolent still. Indeed, pathologists sometimes have trouble ascertaining whether they are truly malignant; women have a good chance of surviving them. The less resemblance cancer cells bear to the tissue that spawned them, the worse the prognosis for the patient.

As I have said, almost all cancer researchers think that the disease is triggered by an accidental change in the DNA of at least one cell. That cell divides, producing two cells, then four, then eight, and so on, with the volume of the tumor doubling in each successive generation. By the time the tumor has doubled twenty-three times, the original cancer cell has multiplied to more than eight million. At that point the tumor is about an eighth of an inch in diameter, just big enough to be detected (sometimes) by a mammogram.

Such a tumor is not very dangerous by itself; the danger lies in the metastases. The question is how soon the tumor metastasizes.

For almost thirty years John S. Spratt, a cancer surgeon now at the University of Louisville Department of Surgery, has been measuring the growth rates of breast tumors. In one of his most recent studies, performed in collaboration with researchers from Heidelberg, Germany, Spratt examined the progressive mammograms of 448 women who had tumors that turned out to have been visible in mammograms made before the tumors were diagnosed. (The women's doctors were not necessarily at fault for missing the tumors; in many cases mammographic imagery is ambiguous.) Comparing first, second, and even third mammograms provided evidence of how fast the tumors grew in the intervals. The median doubling time was 260 days, but the range was considerable: the fastest tumor doubled in ten days, the slowest in 7,051 days--that is, almost twenty years. These figures have striking implications.

Consider a woman who is unlucky enough to develop a single cancerous cell on her forty-third birthday. If the woman is especially unlucky, the cell has a fast doubling time of, say, thirty days. Twenty-three cell generations later the tumor might be visible on a mammogram; in another six or seven doublings it will be just big enough to feel. By then the woman will be forty-five. She will probably die before her fiftieth birthday. If, though, the woman develops a cancer with a slow doubling time of, say, 360 days, twenty-three doublings will take about twenty-three years, at which point the tumor might be seen with mammography. The tumor will be palpable in another six or seven years, meaning that without mammography it probably would not be detected until the woman was in her mid-seventies. By that age some people have already died of other causes.

I have simplified these calculations considerably. Spratt and his German colleagues found that breast cancers do not grow at a constant rate but instead slow down as time passes. Yet the principle holds that tumors that begin with fast doubling rates grow faster than tumors that begin with slow doubling rates at comparable stages of formation.

Close scrutiny of tumor doubling times could explain why the earlier diagnoses provided by mammography seem to provide so little prolonging of individual lives, despite the statistical appearance of benefit caused by earlier diagnosis. Although mammography is able to spot tumors as small as an eighth of an inch, which contain eight million cells, the average size at diagnosis with mammography is about 600 million cells. Such a tumor is only a bit more than a quarter of an inch across, but it has already doubled almost twenty-seven times and may have been in the body for decades. The average size of tumors detected by palpation is about 45 billion cells and about an inch and a quarter in diameter; these tumors have doubled an additional eight or nine times. To argue that earlier diagnosis provides an important benefit, one must believe that the tumor is considerably likelier to spread in those eight or nine later doublings than it was in the preceding twenty-seven.

There is no evidence that this is the case; indeed, the small amount of available data suggests that this view is wrong. With mammography we can see breast tumors earlier than we could before. But it is illogical to assume that our newfound ability to observe breast tumors between the twenty-seventh and thirty-fifth doublings means that they are especially likely to spread during this time or afterward and not before. If tumors are more likely to metastasize after rather than before mammography can detect them, the burden is on mammography advocates to demonstrate it. Meanwhile, I believe that the reasonable course is to assume that breast cancer can spread at any time in its development, and that metastasis has probably already occurred by the time we are able to detect the primary tumor. If this view is correct--and I should stress that studies to prove it have not yet been conducted--then it would explain why research has had such difficulty proving that mammography can save women's lives.

Similarly, examination of tumor doubling times could explain why chemotherapy boosts five- and ten-year survival rates but has little impact on the annual percentage of women who die of breast cancer--that is, why it helps women with the disease to live longer but leaves them just as likely to die of metastatic breast cancer in the end. My best guess is that adjuvant chemotherapy wipes out 95 to 99.9 percent of the residual cancer cells in a patient's body. (It doesn't get them all because the remaining tumor cells are innately resistant to chemotherapy.) Expressed as a percentage, the figures are impressive, but the actual impact is surprisingly slight. Suppose that a woman's tumor has metastasized and that the new tumor has grown to a million cells--a lot of cells, but not enough to be seen by the naked eye, or palpated, or spotted by any current imaging method (CAT scan, ultrasound, magnetic resonance imaging, and so on). If chemotherapy kills 99 percent of the cancer cells in a woman's body, this prophylactic treatment will reduce the metastasis from a million cells to 10,000. The remaining cells, which are resistant to chemotherapy, will keep on proliferating, more than likely at the same rate. In six and two thirds cell generations the tumor will have grown back to a million cells and the woman will be right back where she was before treatment began.

Cruelly, chemotherapy helps least those who need it most. If a woman's cancer has the short doubling time of thirty days, the six and two thirds doublings the tumor needs to recover from chemotherapy translate into about 200 days. Because chemotherapy is often administered monthly for six months, the gain is roughly equivalent to the length of treatment. Producing so much suffering, chemotherapy would in this case be a dubious exercise. If the woman's cancer has a doubling time of 360 days, however, she would gain 2,400 days, which is six and a half years. That sounds like a good payoff, but does she need it?If cancer were diagnosed in that woman at sixty-four (the median age of diagnosis), her slow-growing metastases would probably not become life-threatening for twenty to twenty-five years, when she would be in her late eighties. Because most people do not live that long, there would be little point in subjecting her to a round of chemotherapeutic treatment that would give her another seven years when she probably would die of something else in the meantime. If chemotherapy has little impact on a woman's chance of surviving either aggressive or indolent tumors, is it any wonder that it makes few inroads on mortality?

At the same time, chemotherapy should not be dismissed. The calculations above, for doubling times of thirty and 360 days, represent extremes; I used them to illustrate my point. A more representative example would apply Spratt's median doubling time of 260 days to my hypothetical forty-three-year-old woman. If, as before, the first cancer cell develops on her birthday, the resultant tumor could take eighteen to twenty years to show up on a mammogram. (Such calculations are necessarily inexact, because individual tumors do not always grow at the same rate.) The woman would then be in her early sixties--near the median age of diagnosis. With no treatment other than lumpectomy, she would be likely to die before the age of seventy-five. But if chemotherapy gave the woman the time it would take the tumor to double another six or seven times, the onset of life-threatening metastatic disease would be postponed until the woman was at least eighty; antihormonal therapy might buy an equivalent number of years. In real terms the achievement would probably be smaller, because people in their eighties are likely to die of heart disease or some other condition. Nonetheless, the woman would have gained five to ten years of life. This is a precious gift, one that she and her doctor can justly celebrate.

But consider the breast-cancer patients doctors most dread seeing--women in their thirties or forties. Such cases are relatively uncommon; breast cancer owes its status as the leading killer of women in this age group mostly to the even lower likelihood that they will be killed by anything else. Nonetheless, the individual tragedy of a disease that strikes down young, vibrant people makes it disproportionately urgent to treat them. Sadly, younger women in whom cancer is diagnosed are more likely than older women to have fast-growing tumors, because slow-growing tumors are usually still too small to detect. Given the probable doubling rates, these women will be lucky if we can give them an extra five years. Five years is, of course, much better than nothing--but much less than the thirty or forty years these women will lose. Anyone who treats younger breast-cancer patients knows that we will not have made major progress in the treatment of this disease until we can give women like these, with fast-growing cancers, thirty doubling times rather than six or seven.

CANCER OLD AND NEW

In effect, mammography today provides our definition of breast cancer. Any tumor spotted on a mammogram is treated, almost reflexively, with surgery, radiation, and often chemotherapy and antihormonal drugs. Thinking about doubling times suggests the inadequacy of this approach. When doctors diagnosed breast cancer by palpation in annual exams, they found principally fast-growing tumors--ones whose average doubling time, according to the work of Spratt and other researchers, was about ninety days. Despite decades of work, medicine still is unable to treat this kind of cancer effectively. Today the spectrum of breast cancer is different. Perhaps because of the hormonal changes created by the changes in women's lives, physicians are increasingly likely to observe the "new" cancer described above, which is slower-growing and much less dangerous. These cancers, because they progress so much more slowly, have a radically different impact on women's lives. For that reason we should be more discriminating in how we treat them.

"New" may be a misnomer for this slow-growing breast cancer. Although its incidence has risen, I suspect that it has been with us for at least fifty years; we just weren't able to see it. In fact, I would not be surprised if someday we are all found to harbor somewhere in our bodies several small, slow-growing tumors that will never cause us any problems. (They are beaten to the punch by cardiovascular disease or faster-growing cancers.)

Among the most important varieties of the new breast cancer is the in situ tumor--the small, localized, almost nongrowing tumor that at the time of diagnosis has seemingly neither become invasive nor developed the capacity to metastasize. Prior to mammography, as noted earlier, in situ tumors accounted for only one to two percent of all breast-cancer diagnoses, whereas today in communities where people see doctors often and have lots of tests, in situ tumors account for at least 10 percent of all breast-cancer diagnoses. After lumpectomy and radiation, only one out of ten in situ malignancies recurs in the next five to eight years.

Most of my colleagues celebrate this as a triumph, because it appears that we are catching cancers earlier than ever and curing more of them. They may be right. But consider this--if one out of ten in situ cancers recurs after treatment, nine out of ten do not. If my view is correct, even without treatment many or most in situ cancers would never have grown big enough to be detected by palpation, let alone to pose a threat to life. They might even have become invasive and metastasized, but the metastases would also be too small to be detectable and would never be lethal--rendering the recurrence rate and thus the question of treatment ultimately unimportant to survival. As a result, mammography is only leading physicians to diagnose an ever-larger number of harmless tumors. Patients who otherwise would never have known they have cancer may needlessly suffer through the unique pain, anxiety, disfigurement, and expense associated with modern medicine and cancer. For all we know, the chief effect of mammography has been to disguise our inability to cure the old cancer, by burying it in cases of new cancer.

WHEN THE DIAGNOSIS
IS POSITIVE

Because of the prevalence of in situ and other slow-growing breast cancers, women who receive a positive mammogram should not despair. Two thirds to four fifths of positive mammograms lead to biopsies that do not reveal cancer. Even if the biopsy indicates cancer, the patient should keep in mind that not all tumors are truly dangerous, and she should strive to learn what kind of tumor she has.

Although scientists are divided in their opinion of its accuracy, I believe that one of the most promising gauges of risk is the "S-phase fraction," which is a rough measure of a tumor's doubling time, derived from a technique known as flow cytometry. Technicians calculate this measure by chopping up a small amount of tumor tissue in a kind of specialized blender, staining the cell nuclei with a dye, and squirting the result one cell at a time through a very fine nozzle. The cells shoot through a thin laser beam, each nucleus casting a shadow as it crosses the light. Computers record the shadows with enough detail to discern the approximate percentage of cells in the sample that are dividing. From these data physicians can infer whether the cancer is aggressive (a doubling time kf sixty days or less), moderate (sixty-one to 150 days), indolent (151 to 300 days), or very indolent (more than 300 days). Because tumor growth rates may change over time, and metastases do not necessarily march in lockstep with the tumors that spawned them, the actual situation faced by patients is more complex than indicated by this summary. Nevertheless, Ibelieve that the broad principle holds:armed with information about a tumor's growth rate and the patient's age at diagnosis, doctors could often be more informative than they are now about what lies ahead for their patients.

If doctors could accurately gauge tumor growth rates, using any agreed-upon test, my strong hunch is that about a third of the tumors now detected would be found not to need treatment beyond removal of the tumor itself. Perhaps another quarter of women in whom breast cancer is diagnosed could gain considerable time--enough to take them safely into old age--with antihormonal therapy alone. The remainder could be helped by the combination of surgery, radiation, and chemotherapy, though not nearly as much as the providers of these treatments or their patients would hope. For this last group of women, I am very sorry to say, modern medicine has less to offer than newspaper headlines suggest. The outcome was dictated well before diagnosis--by the date the first cancer cells developed and by the rate at which they grew.

If, as I suspect, a woman's fate is set very early in the development of a tumor, it seems implausible that advances in detection will have an impact on the disease. One can always hope that science will develop a wonder drug that eradicates tumors completely, even when they can't be seen or felt. But for the present I think we should focus research on improving our ability to distinguish between women with breast cancer who can benefit from aggressive treatment and the larger number who will gain little from it no matter what we do.

Dreaming

2008-03-10T18:16:00.000-07:00

By the end of the year I should have enough hair for a style. I am so damn excited to have hair again. I can't tell you. I'm over wearing hats and my wig is itchy. Drives me insane. Try to imagine this style on me rather than the cyborg its sitting on here.

Egg Sauce Dead

2008-03-10T17:30:00.000-07:00

You read that right. I'm exhausted from working five hours today. Meeting lots of new people, trying to pay attention during orientation and freezing my ass of all day did it. My brain doesn't handle stimulation very well these days and my eyesight is getting worse, but I don't think that's chemo-related. Its going to be a relatively low stress job. I'll be paid about one third of what I was making this time last year however alot has changed since then.

I quit my 20 year career in IT, got married, went to Hawaii on a honeymoon, sold John's house, we bought a house, rented my old house, John started having heart arrhythmias, I went back to college, I got cancer and had a double mastectomy and oophorectomy followed by four rounds of chemo, passed my pharmcy tech certification test and then started a new job. No wonder I'm tired. John is very tired these days also.

Three days from now I'll be in the chemo room again. My big bro is coming for this one. What a guy! It will be really nice to have him there. He'll be a great diversion from the rather scary process. He is so good with people. Puts everyone at ease with his good natured personality and tells incredibly lame jokes. They make you groan and then you can't help but laugh because he thinks they are funny. I wish I was more like him. Here he is sneaking cheesecake seconds while no one's looking. His oldest son and darling wife are in the picture also.

Waking Up

2008-03-09T08:19:00.001-07:00

I am proud of my body. Its stunning to me to witness how it recuperates. Its sunny today in Missoula and in the new office that I have set up in our loft I can look out four different windows. I see snow covered mountains shimmering in the sun. Blue sky beyond.

I have a new job to start tomorrow. New adventures, new people and a renewal of my spirit which had grown somewhat depressed over the past couple of weeks.

I will take a nice long run in the sun this morning. Then a hot bath. What could be better? Its all down hill from here. In three weeks and four days I will have my last chemo treatment. I will be set free from many reminders of my new life with cancer.

I am also quite proud of my ability to accept cancer. I have honestly never questioned why it happened to me. I accepted it and moved quickly to get it removed from my body wherever it might lie. I don't like to use the word fight. I have not fought cancer. I am not a fighter in any way, shape or form. I have tried to visualize chemotherapy killing remaining cancer cells but my mind refuses. Its too violent. I liked the idea of surgery cutting out the cancer cells and then letting them go outside, like a spider. After all, those cancer cells are ME.

I've finished my big cup of tea and now its time to get moving. Hope your day is wonderful. If your child asks you to play today stop everything and play. They will stop asking one day.

I See A Pattern

2008-03-06T20:48:00.000-08:00

For two days after a chemo treatment I am physically ailing enough that I don't have spare energy for worry or doubt. When physical effects begin to subside but I am not yet strong enough to resume interesting activities, my mind gravitates to dark places. Its during that week long period, when the toll chemo takes on my body is particularly evident, that I am convinced I cannot do another. Recovery from chemo is unlike other illnesses I've experienced. Its not like a cold or flu. Its as much mental as it is physical. Its dizzyness and despair. Nausea and depression. Mouth sores and grief. Fatigue and distress. Sore muscles and exasperation. But it doesn't last forever. After that week, only fatigue, sore fingers and dull taste buds persist. I am caught off-guard by feelings of joy. I can begin to run short distances. The final couple days before treatment I can run as far as four miles, albeit slowly.

My next chemo treatment is a week from today. I can now forsee when turmoil will set in and I hope this knowledge keeps me from repeating the pattern.

I don't have the guts to not finish my chemo treatments.

Limits

2008-03-05T21:03:00.000-08:00

Labor started on a Friday afternoon. It was the first day of the Masters tournament, April 1994. I left work early with labor pains occurring every ten minutes or so. I was apprehensive but also relieved that Tanner would be born soon. I was two and a half weeks overdue and ready. By late Friday night the pains were coming every five to seven minutes and we went to the hospital. After a quick examination by a nurse we were sent home. I was only two cm dilated.

Friday night was a long night. I spent a lot of time in the shower alternating the water temperature between warm and hot. I had found that the goose-bumps that accompanied the switch to the hotter temperature was a natural pain reliever. I tried to sleep but was woken up every few minutes with contractions.

Saturday was more of the same. With the Masters Tournament on the TV, I spent the day on my hands and knees resting my head on a stack of pillows, breathing through each contraction. My water had still not broken and we were told not to come back to the hospital until it did. Saturday night was spent in the shower again. I was growing exhausted having not slept for close to forty hours.

Sunday brought the agony of back labor. We phoned a chiropractor who made a house call. He showed Gordy how to apply pressure to the base of my spine which helped with the pain. By Sunday evening with no end of labor in sight we went to the hospital again. I was still only two cm dilated. My OB doctor said that it was still false labor and to go back home. My doctor didn’t think highly of ultrasounds and had not done one during my pregnancy. The hospital did not do an ultrasound during labor so we did not know that Tanner was turned posterior. This was the reason for the non-productive contractions. During each contraction Tanner’s head pressed against my lower spine rather than downward on my cervix. I remember nothing about Sunday night except for desperation for someone to help me.

At five am Monday morning, with my water still not broken and contractions continuing to come every five minutes we went back to the hospital. I had only dilated to three cm. Finally my doctor broke my water with a metal hook and started an IV with pitocin, which would strengthen my contractions. Monday was hell. I was utterly exhausted from not sleeping for more than a few minutes at a time in three days. The back labor continued because Tanner was still posterior. I begged for epidural anesthetic but my doctor would not allow it until I was at least five cm dilated. That day was the only time in my life that I have wanted to die. When I finally got an epidural I dilated to ten cm within an hour.

It was time to push. Adrenaline served me well and I was able to push quite well. Tanner’s head emerged and the doctor turned him. It was at that point that my strength gave out and I gave up. Tanner’s heart rate was dangerously low. The doctor inserted forceps and a silicon suction cap to aid in pulling Tanner out. I remember hearing “if you do not push the baby will die”. Those words were powerful and I pushed. Tanner was born silent and blue. He was revived and I was emotionally vacant.

The misery and desperation of the final minutes prior to Tanner’s birth is difficult to describe but I recall the intensity of the need for someone else to endure for me. There were times when my cancer diagnosis was fresh and nighttime would bring on terror of what laid ahead. As with the desperation of labor, I needed someone else to endure for me. I resigned myself to the fear and wailed into John’s shoulder until I was again, like after Tanner’s birth, emotionally vacant. I think there is a limit to how much fear we can endure before abandoning our cognizance.

My Pal

2008-03-03T22:25:00.000-08:00

My silent partner around the house, sweet little Ringo, in his brand-spanking new cat tree that my Dad built for him last week. My Dad can build anything.

Temptation

2008-03-03T18:41:00.000-08:00

Now and then I allow myself to have a glass of red wine, sometimes two. I feel guilty afterward because my doctor says more than one glass a day causes a 20% increase in cancer risk. She says I shouldn't drink at all. Its hard on your liver and my liver is already being slammed by chemo. I also believe that wine consumption is part of the reason I got cancer. Why do I do it? A glass of wine means more to me than the taste and the relaxation that accompanies it. While I have the glass in my hand I feel like I don't have cancer. POOF its gone.

After diagnosis I started a strict diet recommended by my doctor. Sugar is poison. So is white flour. Meat and dairy that is not organic contains growth hormones which might raise your cancer risk. Red meat is especially bad.

Tonight I ate meatloaf (made with organic beef) and a small chocolate heart. It feels empowering to eat they way I used to eat, even if it's only occasionally.

I long for the end of chemo and the return of my strength.

I dream of returning to Tulum Mexico to feel the warm sun on my skin and to lay reading by the ocean for hours hearing nothing other than the sound of the surf.

Therapy By Blogging

2008-02-29T21:32:00.000-08:00

Thank you for reading, commenting and emailing me. I am deeply touched by your compassionate messages of support. You have helped me more than you can know.

These writings have been therapeutic for me. Here's how I benefit. When I'm anxious or emotional I write down the thought that is persisting. The act of writing forces me to stop everyting else and focus. It feels good then to flesh out the thought. It might take 15 minutes or as long as a couple of hours to finish. When I'm done with a blog entry I'm no longer preoccupied with the feeling and can usually let it go.

Hearing from people who can relate to what I've said helps me in another way. It alleviates my fear that my thoughts are abnormal or even worse, hysterical.

Picture Perfect

2008-02-28T12:18:00.000-08:00

For so long the goal was picture perfect because I believed doing less would be a disappointment. I didn’t deserve full credit if things weren’t done correctly. I needed to work hard and not be lazy. Admitting to slacking off or selfishly spending money on myself, for something I did not need, would diminish other’s opinions of me. Many times I lied, to cover for doing such self-serving things. It wasn’t okay to disappoint people.

In turn, the opposite was also true. If I worked hard and excelled, was responsible and didn’t complain or disappoint, then awful things would not happen. I was protecting myself, those I love and my future. The formula had worked all through my childhood and adulthood. It was insurance to keep everyone safe.

Hearing the words ‘you have cancer’ shattered the façade in a heartless way. The destruction of my false sense of security was swift and cruel. I didn’t experience denial or sadness. Only overwhelming fear. Fear of not being able to protect Tanner from the pain of losing a parent too young. Fear of suffering and losing my health. I was forced to accept that my assumption I would live to an old age was also a façade. Cancer was relentless in reminding me that I could not prevent bad things through self control. Each day since hearing the words I have given up more control. I have given up more assumptions and the false security.

After submitting to the terror and grieving for my long-held dreams, I began the process of rebuilding courage, one frightening experience at a time. I still have days where fatigue and anxiety draw me back into darkness and doubt, but they happen less frequently as time goes on. These days I don’t think very often of the future and am less burdened because I no longer follow my safe rituals as before. I can see and feel things with innocence again, as I did as a child. I am grateful for this second chance to feel contentedness.