Me and my sister Christmas Eve. All is well.
Monday, December 29, 2008
Wednesday, December 3, 2008
Insurance Issue
I've been trying to get Blue Cross Blue Shield to pay for portion of my surgery bill from one year ago. We've had to pay the surgeon for this portion out of our pocket to keep it from going to collections. The deal is, I elected to have my ovaries taken out at the same time as my mastectomies because I'm BRCA2 positive with BRCA2 comes a high risk of ovarian cancer.
Got the verdict from BCBS yesterday and its a big fat no. The oophorectomy was elective. I really don't think it was elective. I bet 100% of oncologists would recommend it for a BRCA patient. You'd think BCBS would be interested in paying for preventative procedures that hopefully avoid further cost to them, in the form of astronomically expensive chemo treatments.
I'm not ready to give up yet however. There is a website called FORCE that deals specifically with BRCA gene mutation issues. Maybe someone there has tried to influence an insurance company to pay for a claim they initally deny.
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.
Monday, November 24, 2008
Feeling Thankful
Feeling extra thankful this year for a happy & active family and for my continued good health and growing hair. Check out the collages below of Tanner, Quinn and Me & John. We made them using a cool auto-collage tool from Microsoft. The tool is still in Beta but John found it and here are the results.
Tuesday, November 18, 2008
2-Fer
I got a surprise moments before my colonoscopy was to begin yesterday. I was informed that I was also going to have a esophagogastroduodenoscopy! I initially said no, thinking it was a mistake. But the orders from my oncologist clearly stated that I was going to get scoped from both ends!
Backing up.... I should explain that prepping for the colonoscopy was not a big deal. Had to drink a gallon of slightly sweet, slightly salty solution the afternoon prior to my appointment. It made me feel a little naseous and really bloated until the solution did the trick and emptied me out. The hardest part was dealing with the hunger pangs. I had several eating dreams that night.
The next morning I took .5 mg of clonazepam (for anxiety) and checked in to the hospital at 11:30. By 1:30 the I.V. was in (on the first try yay!) and I was signing release forms and being wheeled in to the procedure room. Once again I was surprised by how cold they keep operating rooms.
I briefly met the doctor who asked me how I was feeling. I said fine and to please sedate me heavily. I did not want to know what was happening.
Shortly later I saw him insert a syringe into my I.V. and I began to feel dizzy and faint. He asked me to roll onto my left hand side. I remember nothing of the scope being put down my throat. However I do remember being told twice to breathe. A pharmacist that I work with, who spent some time as a tech for the procedure, said that sometimes a patient gets so relaxed they 'forget' to breathe and need to be reminded. I also remember complaining four times about pain during the colonoscopy. It felt kindof like labor pains and I think I yelled ow 4 times.
Next thing I knew I was in recovery waking up and wanting very badly to go back to sleep. I did close my eyes and try to go back to sleep a couple times but finally gave in to the nurse who kept bothering me by removing my I.V. Pretty soon John came in and I got myself dressed and rode the wheel chair up to the front door of the hospital.
John and I were really hungry (John fasted for a day in solidarity with me) so we headed to Johnny Carinos. I ordered some food but could only manage a few bites. I was just too wiped out and went out to the car to take a nap in the back seat while John hurriedly ate. We came home and I crashed for a good part of the night on the couch.
All & all it was a very relaxing day. And the preliminary report from the nurse in the recovery room is that both scopes found no problems. YAY! It sounded like one biopsy was taken but I'm not sure about that. I should hear from my oncologist about the final report within a week or so.
Not sure what, if anything, she'll want to do to look for another cause for my low iron level. I'll have another checkup with a CBC in January. Until then I'll continue to take an iron supplement daily.
Thanks for checking in on me.
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.
Wednesday, November 5, 2008
One Year Since Cancer Took Over
One year ago I was petrified. Not really from the darn good chance that I had cancer. I had had a suspicious mammogram which called for a followup mammogram at the hospital. That second mammogram caused a stir. I was taken immediately for an ultrasound. Then scheduled for biopsies. One year ago today I was much more scared of the biopsies than of the thought that I might have cancer.
What I couldn't imagine then, after being diagnosed, was that FIVE months later I would be FINISHED with surgery and chemo. Those five months however were at times horrific and grueling. I'm referring to emotionally horrific and grueling. The physical suffering was secondary. Thats how I remember it now.
Whats on my mind now? I hate my hair.
I had my first post-chemo haircut a couple weeks ago. Not a whole lot she could do but trim the sides and back to make it look somewhat like a style someone might choose.
I should be damn happy to have hair. I need to be slapped back to April when I had no hair. What happened to my gratitude?
In many ways I've moved on.
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.
Monday, November 3, 2008
Thursday, October 23, 2008
Xray Clear
My chest xray shows no sign of disease. I have a colonoscopy scheduled for mid November to look for bleeding to explain my low iron level. I've gotten some kind responses to my request for info about the procedure. Its not worth worrying about. It will also be nice to hopefully get a report of no sign of disease in my colon. I got sad news tonight about a friend who I admire greatly who I worked with for a few years that was recently diagnosed with metastatic colon cancer. She is an amazing, strong, incredible business woman and friend. I wish I could transport myself to Cleveland tonight to hold her hand and be with her and her fear.
Monday, October 20, 2008
6 Month Checkup
So far so good! Had my checkup with Dr Schmidt last wednesday and my physical exam and tumor markers both brought good news. I should hear about the results of my chest xray today. They will compare the xray taken thursday with one taken in July. If anything looks fishy Dr Schmidt will order an MRI. Whew! I can relax with that good news.
I found out that my iron level has plummeted down into the 20s which makes me a little anemic. My iron level was up in the low 100s in July. Usually the cause is bleeding somewhere in the stomach or colon. Bleeding can be caused by something innoculous like a small blood vessel that needs to be cauterized, an ulcer or something more serious like colon cancer. So Laurie gets to experience a colonoscopy soon to look for the problem and fix it. I believe it will not be serious and easily fixable.
Anyone had a colonoscopy? Does it hurt? What kind of sedation did you have? Comment or email me okay?
I'll be back with xray results. Thanks for checking in on me.
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.
Monday, October 6, 2008
Easier
Its easier to talk and think about cancer from a purely scientific perspective. Its alot less scary than focusing on emotion and fear. I think thats why I gravitate to books that discuss theories and action plans for keeping cancer at bay.
If you have cancer and haven't read Anticancer. Read it. Please. It will make you feel powerful. I worry less about recurrence because I am following the recommendations in this book. Really, everyone could follow the guidelines because its good healthy stuff.
My 6 month checkup is next wednesday. I am so happy that John will be able to go with me this time. My sister Anne was great company and support for my 3 month checkup. She made a nerve-racking 4 hour ordeal comfortable and even a little bit fun. Thats Anne for ya. God, she is a great sister.
Anyway, back to thinking about cancer scientifically. Viewing the disease from a cellular level allows me to consider what happens without emotion. Cancer is just cells. Cells refusing to die. Bully cells versus an immune system. But I believe I have a really strong immune system. I haven't been sick in years! Even during chemo at my weakest I did not get a cold.
Without estrogen fertilizer in my body feeding cancer cells, I think that any growth of cancer is surely slowed way down. So I am going into the 6 month checkup feeling good about my future.
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.
Monday, September 29, 2008
Trying
Lets just say I am trying. Trying meditation. Exercising every day. Trying not to eat anything bad. Trying to eat cancer-fighting foods at every opportunity. Trying to remember day-to-day what those foods are. Trying not to spend money in order to feel short term relief from fear. Trying not to drink. Trying to breathe. Trying to enjoy moments.
I need to make an appointment for my 6 month checkup. Really should do that. But I am too busy being preoccupied with controlling myself that it doesn't get done. It surprises me that they don't give you a sticker, like the oil change places do, to remind you that you need to get your ass back in to be checked for evidence of disease.
I have quite a bit of faith in my ability to make my body inhospitable to the growth of cancer cells. I understand now that we all have the makings of cancer in our body. Its up to our immune system to take down rouge cells before they gain traction. A cancer cell causes our immune system to inflame the area around it and tricks our body into building a special blood supply to feed it. It does not follow the rule of cell aptosis (cell death) that healthy normal cells follow. It multiplies instead and creates a larger and larger cancerous mass that starves healthy cells surrounding it.
I believe that by following a diet consisting of anti-inflamatory foods I am making my body less hospitable to cancer growth. Time will tell if I believe in false promises. The explanation makes sense to me though and I don't feel deprived with the diet. It's laid out in the book Anticancer (and many others).
I'm still scared shitless sometimes though. Thats just the way it is.
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.
Wednesday, September 17, 2008
Anger & Pain
I'm completely off the anti-depressant that I began taking shortly after I learned I had cancer. I tapered off the drug a few weeks ago while in Fiji. A great place to do it. Since then its been a daily struggle controlling anger that was hidden beneath a Lexapro blanket.
I am just really mad about having to deal with cancer and the body it's left in its wake. There's no getting around it, I really hate cancer these days. Gone, from my current perspective, is the notion that being stricken with cancer is worth it in order to revel in each ordinary day. I'm so angry that it took a crisis to make me value and care for the body that remains.
Upon waking I am not angry. It builds gradually beginning with my first steps out of bed. Each time I am forced to slow down and wait until pain in my ankles, knees and hips subsides I grow more frustrated. I must start slowly. Each time I rise from a chair. Or bend my knees to reach for something below. Or begin a run. Or stretch my legs.
I go to yoga now three times a week at a wonderful studio. One teacher pushes me pretty hard. I haven't told her why I can't straighten my arms when a pose calls for reaching overhead. But she helps me so much by forcing my arms to straighten because that is not something I can do by myself because of scar tissue from the mastectomies. The classes are in the late afternoon or evening and by that time I am usually pretty tense and hypersensitive. There hasn't been a class that I didn't want to quit. Run out. To cry. I get so frustrated with my limitations. And the pain. The class moves on though and distracts me enough to move me through the crazy emotions, ending with several minutes of peaceful meditation.
I am also hypersensitive to noise. Especially in the evening. If the t.v is blaring and someone is trying to speak over the noise my pulse quickens and chest tightens. I put up with it as long as I can and look forward to the peace and quiet of the night.
Last weekend at the Grizzly football game I was at the end of my rope frustration-wise by part way through the 2nd quarter. Luckily my sister was working the entrance at the other side of the stadium so I had a reason to leave the crowd for 20 minutes and enjoy talking with Anne. It is a bit too crowded where we sit. And its difficult at times to concentrate on the game because of constant chatter among the people in front and next to us. I avoided eye contact. Sensory overload and heat from the sun added to the anger and frustration inside of me. I took a long walk outside of the stadium at halftime to relax. Late in the third quarter my mom and I explored the new stadium expansion and cooled down in the shade provided underneath. I was very happy to leave the game early and escape the overwhelming atmosphere.
So that's where I'm at. Looking for healthy ways to express anger that has been pent up for close to a year now. I know that this too will pass.
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.
Sunday, September 7, 2008
Anticancer
I'm hell-bent on healthy living. These days, when my mind is not engaged in learning how I can fight off disease, I am scared. When I'm scared I don't take a full breath. In this state it hurts to breathe deeply. So, to fend off recurrence fear death spirals (think fighter pilot spiraling toward earth) I keep my mind busy.
My mind is not easily diverted from fear however. I have started, literally, 10-15 books in the past couple months. Haven't gotten more than a few chapters into any of them. What a waste of money.
That is until a few days ago. I found of book that is quenching my thirst for knowledge. You know when you find a book that connects to the very core of your beliefs? You want everyone to read it. Especially the people you can't live without. Please read this book. Anticancer - A new way of life. If you have cancer, someone you love has cancer, or you are even mildly concerned about you or a loved one getting cancer (that should include all of you) do me a favor and read it.
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.
Thursday, August 28, 2008
Bula Laurie
That's how I was greeted when crossing paths with a Fijian on Navini Island. Navini is a remote, private island inhabited only by the owners, the Fijian staff and visitors like us staying in one of the 10 bures.
You get to know the friendly Fijian island staff by name because they spend time with you. Cooking and serving fresh delicious food with genuine welcoming smiles. Teaching you how to weave a basket using palm fronds. Climbing a coconut tree and collecting a coconut for you so that you can taste the sweet milk and flesh inside.
Guiding you on a snorkle excursion through the warm blue pristine water. Sikeli taught me how to dive down deep to see a giant clown fish and sea anenome hiding beneath a forest of colorful coral. He also warned us to shuffle our feet through the sand to avoid surprising a beautiful green and blue polka-dotted stingray. We swam along side baby sharks that circle the island and schools of a variety of brilliantly colored fish and coral.
The Fijians included us in games of Vindi Vindi during the kava ceremony each evening. We spent time and became fast friends with couples from London, Italy, Australia, Poland and New York.
We Parasailed!
We were honored to be asked to be witnesses for Mark and Frankie's beautiful beachside sunset wedding which was punctuated by Frankie being escorted down a sandy path by two Fijian warriors. It was an unforgettable and beautiful ceremony and I wish them many many years of health and happiness!
We filled our days with snorkling, beach volleyball, sea kayaking and reading and napping under our palapa, surrounded by the ever-present sound of the surf. Shoes were taken off on arrival and left off for nine days.
No t.v., phone or newspaper to interrupt our 9 days of catharsis. I was even invited by a wonderful lady from Australia to do yoga with in front of her burre several times.
John and I left our troubles behind, experienced with wonder and excitement the world below the surface of the ocean, so enjoyed the Fijian people, cried some pent up tears and felt time s l o w down. Just what the proverbial doctor ordered.
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.
Friday, August 8, 2008
Time To Rejuvenate
This time next week John and I will be on the beach in Fiji! After a trying year for both of us we decided a few weeks ago to look for a great place to snorkle and escape for a while. Navini is a small island. You can walk around its shore-line in 10 minutes). No day-trippers are allowed so it will just be us, the resort staff and the occupants of the other 9 bures on the island.
I am so excited to learn about the Fijian culture. We'll have the opportunity to visit villages on other islands as the Navini island staff will boat, us free of charge, on an excursion each morning.
We also plan to parasail. We are so fortunate to be able to take this trip. Renewal is important. So is taking advantage of every day we have on this beautiful planet!
Wednesday, August 6, 2008
Is It All In My Head?
So the good news is....the muscle and joint pain I feel is not caused by my joints degenerating. I was getting quite concerned that Femara, which keeps my body from producing estrogen, was having a degenerative effect.
My ankles, knees and hips ache. This is not new. For a while now, however, I've felt that my knee joints were slipping when I am out running. Do you know the slipping feeling? You get a sharp pain below the kneecap and then the knee sort of collapses and you have to catch yourself. My mind associates lasting new abnormal aches and pains, that occur more than they used to, to the effects of Femara.
So I submitted another question to the University of Montana Drug Information Service. I wanted to know if my joint pain, stiffness and slipping weirdness was going to progressively get worse. I wanted to know if it was caused by Femara. My fear was that I wouldn't be able to run at some point. Below is their response.
Thank you for your question regarding Femara and muscle or joint deterioration.
Femara (letrozole) is an aromatase inhibitor that is used in the adjuvant treatment of breast cancer and the prevention of its recurrence. It blocks the action of the aromatase enzyme, which converts androgens to estrogens. Letrozole causes the near complete inhibition of the aromatase enzyme, which will results in a considerable depletion of estrogen levels after two to four days of therapy. This results in the starvation of estrogen-sensitive cancer cells. There have been no published reports of letrozole causing muscle or joint deterioration, but it has been reported to cause musculoskeletal pain, with a 22% incidence of arthralgia and bone pain, 18% incidence of back pain, 10% incidence of limb pain, and a 7% incidence of arthritis and myalgia. The exact cause of musculoskeletal pain is unclear, but the estrogen deprivation associated wtih aromatase inhibitor therapy may provide some explanation.
Estrogen may have an effect on how a person responds to pain. It has been shown that estrogen seems to have an anti-inflammatory effect on tissues in the body, which has been illustrated by the improvement of rheumatoid arthritis, multiple sclerosis and inflammatory bowel disease in women who are pregnant and therefore have higher estrogen levels. Studies suggest that high levels of estrogen may help reduce pain by causing the release of endorphins and enkephalins in the receptors that reduce pain sensitivity in the body. Neurons in the brain and spinal cord that contain opioid receptors may have estrogen receptors that reduce pain sensitivity in the presence of estrogen. When estrogen levels decrease, the ability to reduce pain is diminished. Estrogen deficiency can also cause loss of bone mineral density, which may also contribute to arthralgias.
Aromatase inhibitors such as letrozole, can cause musculoskeletal pain. The exact mechanism is unknown, but there have been no published reports indicating the pain is due to joint or muscle deterioration. The current hypothesis is that the estrogen deficiency caused by aromatase inhibitors may be responsible for increasing the body's sensivity to pain.
There you have it! The pain is in my head (my brain to be exact)! I feel pain more clearly now because I don't have estrogen to block my brain from perceiving it. Thats all. This makes me feel much better about my future. I can handle the pain. Anyone who exercises knows that pain from working your body can feel good. You know you have "damaged" your muscles enough that they will rebuild stronger.
Now when I wake in the morning and hobble to the bathroom I will remember that my joints are fine. I am just feeling more than I used to.
Here's John and I out on a hike a few weeks ago. Check out my hair 3 months post chemo!
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!
Wednesday, July 30, 2008
Does Femara change red wine's effect on estrogen in the body?
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.
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.
Wednesday, July 23, 2008
First Day Of My Life
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.
Sunday, July 20, 2008
Level Out
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 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
Thursday, July 17, 2008
I Passed!
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'?
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'?
Wednesday, July 9, 2008
3 Month Checkup
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.
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.
Monday, July 7, 2008
Solidarity
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.
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.
Saturday, July 5, 2008
I Hope You Know
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.
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.
Tuesday, July 1, 2008
His Extraordinary Courage
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.
Thursday, June 26, 2008
What I Wouldn't Give
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.
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.
Tuesday, June 24, 2008
Would You Care To Share?
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.
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
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.
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
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.
This anti-cancer effect is also being studied with respect to prostate cancer.
Sunday, June 22, 2008
Fun Weekend At The Lake
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.
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.
Wednesday, June 18, 2008
So Here's What I'm Thinking
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.
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.
Saturday, June 14, 2008
My Body Without Estrogen
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.
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.
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