Well, at the risk of boring you, I'm neutropenic again, per my primary care doctor. The neulasta has worn off. In my current condition I must go to the emergency room if I get a fever because my immune system is severly compromised.
I see the hematologist at the end of May.
Now I have to return to living my life "carefully" and be mindful of my exposure to germs, avoid crowds, and do everything I can to boost my immune system. I'm tired all the time, but not sure how much of this fatigue is post-chemo versus immune suppressed depletion.
I am making a huge effort not to be so self-centered on my health, and it's not so easy when simple things become hard. My arthritis is getting a little worse. The weeding did make my hands swell, but I wanted to enjoy nature. I want to be active, be strong, live life fully.
Now that I can focus on details a bit better, my post-chemo experiences are much richer. If you ever know of anyone else who is in the throws of chemo, be patient.
The fog of chemo makes it so difficult to communicate and participate in activities. I was listening to a recording of a woman's state of mind while she was undergoing chemo for breast cancer. She said that she was happy to just stare at the ceiling, no energy for movies or even TV. I thought, "I can relate".
Anyway, it's still a good day. My new hematologist seems intelligent, very curious and wants to solve my immunity dilemna. Hopefully my insurance will approve GSF shots to boost my immune system (won't be cheap). Hopefully we can find out "why".
In the mean time I am going to get my dictionary out, find the word "normal" and cross out the definition. I'll then proceed to write "not applicable to Denise Archuleta". HA!
CDC Symptom Diary Card
Tuesday, May 04, 2010
Sunday, May 02, 2010
mother nature
The other day I was blessed with the ability to pull weeds. Now, that may not sound like a lot of fun, but I was truly in a state of total calm. The soil dark and rich with nitrates reveals the essence of life. It had just rained and the soil was soft on my hands, easy on my joints, sweet on my senses.
It reminded me that as our bodies return to the soil, mother earth, our spirit goes with God to be in eternal serenity. (At least that is my belief).
Touching each grain of richness, saying hello to a few earthworms, and enjoying the fragrance of the dirt and grass caused me to breathe deep and smile. In the background I could hear the birds singing their stories for all to hear.
For that moment was a beautiful moment. And for each moment, is a beautiful moment, if only we can create it to be so.
And then I was blessed again on Saturday with a visit from Mandy and her children. We played, laughed, watched the Kentucky Derby and talked. Mom was thrilled. It was so wonderful to just take a moment to forget about problems and be happy.
It reminded me that as our bodies return to the soil, mother earth, our spirit goes with God to be in eternal serenity. (At least that is my belief).
Touching each grain of richness, saying hello to a few earthworms, and enjoying the fragrance of the dirt and grass caused me to breathe deep and smile. In the background I could hear the birds singing their stories for all to hear.
For that moment was a beautiful moment. And for each moment, is a beautiful moment, if only we can create it to be so.
And then I was blessed again on Saturday with a visit from Mandy and her children. We played, laughed, watched the Kentucky Derby and talked. Mom was thrilled. It was so wonderful to just take a moment to forget about problems and be happy.
Tuesday, April 20, 2010
drugs
I just posted a little blurb about the outrageous costs of medications on Facebook. Not enough space allowed on Facebook to go into detail, so here I will explain what I meant.
In January, the cancer center started injecting me with neulasta instead of another immune system enhancing drug. Neulasta was great, it lasted three weeks. What they didn't mention is that neulasta costs over 7 thousand dollars per injection! My 24 hour stay at the hopsital for Cisplatin cost less than my neulasta injection.
Thank God a million times over for insurance, but I do have to pay a portion.
I needed the injection, there is no dispute. I have been in a fog for the duration of my chemo. As the fog clears, I am becoming more and more aware of nuances, wondering why I never even inquired as to the medication's cost. Usually I do ask about costs.
Well, anyway, Congress really needs to find a way to pressure pharmaceutical companies to make their medications more affordable. They really have an advantage. Like being the only water pump in the Sahara desert, supply and demand rule.
My gratitude remains strong, just experiencing a little irritation. Here's to better days.
In January, the cancer center started injecting me with neulasta instead of another immune system enhancing drug. Neulasta was great, it lasted three weeks. What they didn't mention is that neulasta costs over 7 thousand dollars per injection! My 24 hour stay at the hopsital for Cisplatin cost less than my neulasta injection.
Thank God a million times over for insurance, but I do have to pay a portion.
I needed the injection, there is no dispute. I have been in a fog for the duration of my chemo. As the fog clears, I am becoming more and more aware of nuances, wondering why I never even inquired as to the medication's cost. Usually I do ask about costs.
Well, anyway, Congress really needs to find a way to pressure pharmaceutical companies to make their medications more affordable. They really have an advantage. Like being the only water pump in the Sahara desert, supply and demand rule.
My gratitude remains strong, just experiencing a little irritation. Here's to better days.
Wednesday, April 14, 2010
Lighter mood today
Today is a brilliant and beautiful day. Sunshine, warmth and flowers fill my view. Today I went to have my port flushed (the port is like a permanent IV access point on my chest wall). It felt good to be able to wait in the lab waiting room and not be totally anxious and fearful. I was relaxed with the half hour wait, watching others, wondering about their stories. I saw people prepping for chemo, some not. Some were anxious and upset about the wait, others quiet and motionless.
I met with the social worker afterwards so that she could help me with some much needed paperwork. The one thing that will ring true for all people with cancer is that managing your cancer is a "job" indeed. I have invested a lot of time and energy into organizing and keeping up with invoices and insurance statements as well as documenting all events associated with my illness. When chemo has it's claws in you, it is a real challenge to find the energy to open the mail, believe me.
So anyway, the social worker was very nice and she plans to help me as much as she can. I made an extra effort to thank her again and tell her that the cancer center's staff are angels, just pure angels.
Chemo really puts you in a deep fog and takes your soul away, your energy, your spirit seem to all disappear. I am not fully back together but feel so much better.
A few weeks ago I received a handmade "get well" card from some children that attend my church's school. I purchased a thank you card today. I feel bad that I hadn't sent it yet, but the truth is that sometimes the smallest responsibilities and activities have at times felt like trying to run in quicksand. I want them to know how much I have appreciated their kindness.
I also borrowed a book from the cancer center library that talks about how diet and exercise can help prevent breast cancer. I figure that since I need to eat healthy and exercise anyway, I just as well follow a useful program. Unfortunately there looms a doubt that I will live to see any breast cancer because my chances of an ovarian cancer relapse exceed the risk of BC. Not to be a downer, it's just my reality. As a matter of fact, as my body heals more, it seems that I am a wee bit more able to deal with "odds" and "risks".
Only God knows when we die. I really believe that I am here for a specific purpose. God has saved me so many times before. I am feeling the urge to really tap into and exercise this unknown talent, and use it. It will come and it will happen.
For today is a bit better than yesterday and who knows how tomorrow will go. Here's to that tomorrow will be.
I met with the social worker afterwards so that she could help me with some much needed paperwork. The one thing that will ring true for all people with cancer is that managing your cancer is a "job" indeed. I have invested a lot of time and energy into organizing and keeping up with invoices and insurance statements as well as documenting all events associated with my illness. When chemo has it's claws in you, it is a real challenge to find the energy to open the mail, believe me.
So anyway, the social worker was very nice and she plans to help me as much as she can. I made an extra effort to thank her again and tell her that the cancer center's staff are angels, just pure angels.
Chemo really puts you in a deep fog and takes your soul away, your energy, your spirit seem to all disappear. I am not fully back together but feel so much better.
A few weeks ago I received a handmade "get well" card from some children that attend my church's school. I purchased a thank you card today. I feel bad that I hadn't sent it yet, but the truth is that sometimes the smallest responsibilities and activities have at times felt like trying to run in quicksand. I want them to know how much I have appreciated their kindness.
I also borrowed a book from the cancer center library that talks about how diet and exercise can help prevent breast cancer. I figure that since I need to eat healthy and exercise anyway, I just as well follow a useful program. Unfortunately there looms a doubt that I will live to see any breast cancer because my chances of an ovarian cancer relapse exceed the risk of BC. Not to be a downer, it's just my reality. As a matter of fact, as my body heals more, it seems that I am a wee bit more able to deal with "odds" and "risks".
Only God knows when we die. I really believe that I am here for a specific purpose. God has saved me so many times before. I am feeling the urge to really tap into and exercise this unknown talent, and use it. It will come and it will happen.
For today is a bit better than yesterday and who knows how tomorrow will go. Here's to that tomorrow will be.
Tuesday, April 13, 2010
Unexpected complications
It has been a while since I have posted. I think I am slowly improving, in spite of the hiccups along the way. For starters, I had the great joy of being able to walk my niece to school last Friday. It was just a few blocks, but I truly was not sure I could do it. It was cold, a little hilly, but worth it. Addie is just a sweetie. Mom was baking cookies with Laria while Patrick and Mandy were at Mandy's doctor appointment. Bless her heart, she is dealing the the BRCA 1 challenge so well. She doesn't dwell on it. She and I have important decisions to make down the road, because the threats are real, but we have to live now. I went with her on her MRI/mammo appointments on Monday, she did so well. So I will be praying for good news on the results and ask everyone to pray for her.
I was told yesterday that I have intermittent bowel obstructions, happy day. I know it's kind of gross to talk about all this but my internal problems are not really going away. This past Saturday I had another episode and got real sick, and I don't have the flu. After reading up on the subject, the only real "cure" is surgery. Intermittent bowel obstructions are when part of your intestines twist and block your body from moving nutrients etc through your tract. I was reading that "IBO" is a complication of major abdominal surgery as well as appendectomies.
So now I am wondering if I should go back to a more liquidy diet, drinking health shakes for dinner etc. I have no idea how or if abdominal exercises help or hurt. This is a structural problem, my netting is gone. I was warned by my internist that this could happen, but had no idea if it really would.
So, anyway, not sure how I will deal with it because it seems like there's really nothing I can do other than surgery when it occurs. It can be life threatening, so there's another looming black cloud hanging over my door.
The good news is that I think Paxil is helping some. I don't have as many really bad worrisome thoughts as I used to. The weather is slightly better, flowers and trees are in bloom. We need to pull weeds and start on our garden. There are good days to be had and I am still trying to hear God's calling.
The irony is that my latest "IBO" episode started at Church. Two patrons were so helpful to me, so helpful. Thank God I was able to drive myself home.
I still believe there is a place for me in the capacity of an advocate, helping women and primary care physicians become more aware of the mixture of unassuming symptoms that combine in the form of deadly ovarian cancer. There is nothing that can be done about the BRCA 1 mutation, but my cancer could and should have been identified earlier. I have forgiven my doctors for ignoring my complaints, but still feel the need to "do something" about it. Worrying about possible breast cancer is too much to confront at this time.
I'm starting to open my mind to possibilities, and hope that something comes to the surface.
My niece Shelby has her 10th birthday in a few weeks, along with Aunt Deb. That's exciting. Laria is coming back with Mandy sometime this week so grandma can teach her to paint. How fun will that be?
Oh, my insurance denied coverage of my breast MRI. Just found that out a few days ago. So, I'll deal with that when I get the bill from the cancer center. Mildly frustrated in that I thought they were going to pre-authorize the procedure. I guess I was supposed to do that. Maybe they will give me a discount. If not, then I should look into the Susan G. Koman foundation, I think they have financial resources to help women with BRCA 1mutation pay for their MRIs. To be honest, I am just so grateful that I had the MRI. It will work itself out I hope.
Bye for now.
I was told yesterday that I have intermittent bowel obstructions, happy day. I know it's kind of gross to talk about all this but my internal problems are not really going away. This past Saturday I had another episode and got real sick, and I don't have the flu. After reading up on the subject, the only real "cure" is surgery. Intermittent bowel obstructions are when part of your intestines twist and block your body from moving nutrients etc through your tract. I was reading that "IBO" is a complication of major abdominal surgery as well as appendectomies.
So now I am wondering if I should go back to a more liquidy diet, drinking health shakes for dinner etc. I have no idea how or if abdominal exercises help or hurt. This is a structural problem, my netting is gone. I was warned by my internist that this could happen, but had no idea if it really would.
So, anyway, not sure how I will deal with it because it seems like there's really nothing I can do other than surgery when it occurs. It can be life threatening, so there's another looming black cloud hanging over my door.
The good news is that I think Paxil is helping some. I don't have as many really bad worrisome thoughts as I used to. The weather is slightly better, flowers and trees are in bloom. We need to pull weeds and start on our garden. There are good days to be had and I am still trying to hear God's calling.
The irony is that my latest "IBO" episode started at Church. Two patrons were so helpful to me, so helpful. Thank God I was able to drive myself home.
I still believe there is a place for me in the capacity of an advocate, helping women and primary care physicians become more aware of the mixture of unassuming symptoms that combine in the form of deadly ovarian cancer. There is nothing that can be done about the BRCA 1 mutation, but my cancer could and should have been identified earlier. I have forgiven my doctors for ignoring my complaints, but still feel the need to "do something" about it. Worrying about possible breast cancer is too much to confront at this time.
I'm starting to open my mind to possibilities, and hope that something comes to the surface.
My niece Shelby has her 10th birthday in a few weeks, along with Aunt Deb. That's exciting. Laria is coming back with Mandy sometime this week so grandma can teach her to paint. How fun will that be?
Oh, my insurance denied coverage of my breast MRI. Just found that out a few days ago. So, I'll deal with that when I get the bill from the cancer center. Mildly frustrated in that I thought they were going to pre-authorize the procedure. I guess I was supposed to do that. Maybe they will give me a discount. If not, then I should look into the Susan G. Koman foundation, I think they have financial resources to help women with BRCA 1mutation pay for their MRIs. To be honest, I am just so grateful that I had the MRI. It will work itself out I hope.
Bye for now.
Thursday, March 18, 2010
Starting on a new trail for now
Hi everyone.
My mom and sister took me to the oncologist today for my post-chemo appointment. I wanted to share a summary of that visit and share a few feelings about my situation.
For the moment, I am in a good situation as far as ovarian cancer goes. The doctor said that I had a good response to the chemotherapy and that for now, the cancer has subsided. The thing I need to look out for is that statistics show that there is a 60% chance of the cancer returning in the cases of my type of ovarian cancer. Soooooooooooooooooooooooooo my "job" is not to focus on the "what if it returns" scenario, but rather try to focus on how I can heal as the new me.
She said it can take a bit of time for chemo to get out of your system and six months to a year to recover. Because this has been a life altering experience, I cannot expect to return to be the person I was before the cancer. My life is different now.
My hopes are that in taking each day step by step, that I will eventually be able to embrace my new life, not worry about statistics, and live with eternal gratitude for all of God's blessings.
The cancer center is going to monitor me closely for two years minimum, which is great. I couldn't have asked for a better outcome. I have been so blessed, so fortunate. My family and friends have been amazing and could never have made it through this ordeal without you all.
I have come a long way from surgery, surgical recovery, and chemo. Eight months ago I needed help getting in and out of bed and now I'm finished with chemo, ready to get stronger.
In the beginning I was so so so angry at the healthcare system, some of my doctors and insurance restrictions and now I couldn't be happier with my doctors and insurance. Insurance is another blessing. Thank you again Mandy and Patrick!
I have a lot of mixed emotions (which is normal) but for certain am very happy today. I know I am rambling a bit, sorry for that. I just wanted to tell you the good news. I still have odds and end things to do for the next few years, but hopefully the hardest part is over.
Thank you again to all my family and friends that have selflessly helped me throughout this process. I love you!
Denise
My mom and sister took me to the oncologist today for my post-chemo appointment. I wanted to share a summary of that visit and share a few feelings about my situation.
For the moment, I am in a good situation as far as ovarian cancer goes. The doctor said that I had a good response to the chemotherapy and that for now, the cancer has subsided. The thing I need to look out for is that statistics show that there is a 60% chance of the cancer returning in the cases of my type of ovarian cancer. Soooooooooooooooooooooooooo my "job" is not to focus on the "what if it returns" scenario, but rather try to focus on how I can heal as the new me.
She said it can take a bit of time for chemo to get out of your system and six months to a year to recover. Because this has been a life altering experience, I cannot expect to return to be the person I was before the cancer. My life is different now.
My hopes are that in taking each day step by step, that I will eventually be able to embrace my new life, not worry about statistics, and live with eternal gratitude for all of God's blessings.
The cancer center is going to monitor me closely for two years minimum, which is great. I couldn't have asked for a better outcome. I have been so blessed, so fortunate. My family and friends have been amazing and could never have made it through this ordeal without you all.
I have come a long way from surgery, surgical recovery, and chemo. Eight months ago I needed help getting in and out of bed and now I'm finished with chemo, ready to get stronger.
In the beginning I was so so so angry at the healthcare system, some of my doctors and insurance restrictions and now I couldn't be happier with my doctors and insurance. Insurance is another blessing. Thank you again Mandy and Patrick!
I have a lot of mixed emotions (which is normal) but for certain am very happy today. I know I am rambling a bit, sorry for that. I just wanted to tell you the good news. I still have odds and end things to do for the next few years, but hopefully the hardest part is over.
Thank you again to all my family and friends that have selflessly helped me throughout this process. I love you!
Denise
Tuesday, March 16, 2010
thoughts on prognosis
In two days I will see the gynecology oncologist for my "post chemo" review. With trepidation I have researched more on the BRCA 1 mutation along with reviewing additional information on Ovarian Cancer survival statistics. At the same time I am haunted by the fact that there will be an end, just how soon, only God really knows. My thoughts today have been scattered and dark. How long will I really live? What good will I do? How am I going to survive financially while alive? What is my purpose?
I do know that I would love to interview other people who have been diagnosed with a known "killer" disease, and find out how they feel. What keeps them going? Is it faith? What about strong relationships with family and friends? What about daily good deeds, acts of love and kindness? What about simply taking in a sweet breath of fresh air each day and making an effort to remember the moment? What about taking a moment to be with someone you love and just rejoicing in their being? What about sitting in silence and remembering your life?
In other words I have really not the slightest clue how to proceed today. In a few days I hope to have a better idea. It is highly unlikely that my doctor will give me anything concrete, but I do hope she can sort of guide me on how to continue knowing that because of my advanced cancer, there is a strong possibility of it returning.
Did I mention that when I met with the genetic medical oncologist to talk about the BRCA 1 mutation, she glossed over a statement "you are more likely to have ovarian cancer return than to get breast cancer". Still regret digging further into that at the moment, so I'll save that question for Dr. G.
I went onto the FORCE website today and read message boards from mothers who are BRCA 1 positive. It was so sad to hear the guilt from so many who blamed themselves for potentially passing the mutation to their children. Some were angry at God and then others embraced God for the daily graces He gives us. I just pray every day for all in need to reach out to God for his love. We all have our cross to bear. I am not special.
On a side note, my sister and her husband are getting a cute cat for their children. A wonderful yellow cat saved from a shelter. Her children are rejoicing. I am so happy for all of them because I know the girls will be great cat moms. What a blessing to experience such joy.
My sis and her husband have made so many sacrifices in order to help me through this entire ordeal. I have been very fortunate. There are not enough words to express my gratitude. Thank you Mandy!
Love,
Denise
I do know that I would love to interview other people who have been diagnosed with a known "killer" disease, and find out how they feel. What keeps them going? Is it faith? What about strong relationships with family and friends? What about daily good deeds, acts of love and kindness? What about simply taking in a sweet breath of fresh air each day and making an effort to remember the moment? What about taking a moment to be with someone you love and just rejoicing in their being? What about sitting in silence and remembering your life?
In other words I have really not the slightest clue how to proceed today. In a few days I hope to have a better idea. It is highly unlikely that my doctor will give me anything concrete, but I do hope she can sort of guide me on how to continue knowing that because of my advanced cancer, there is a strong possibility of it returning.
Did I mention that when I met with the genetic medical oncologist to talk about the BRCA 1 mutation, she glossed over a statement "you are more likely to have ovarian cancer return than to get breast cancer". Still regret digging further into that at the moment, so I'll save that question for Dr. G.
I went onto the FORCE website today and read message boards from mothers who are BRCA 1 positive. It was so sad to hear the guilt from so many who blamed themselves for potentially passing the mutation to their children. Some were angry at God and then others embraced God for the daily graces He gives us. I just pray every day for all in need to reach out to God for his love. We all have our cross to bear. I am not special.
On a side note, my sister and her husband are getting a cute cat for their children. A wonderful yellow cat saved from a shelter. Her children are rejoicing. I am so happy for all of them because I know the girls will be great cat moms. What a blessing to experience such joy.
My sis and her husband have made so many sacrifices in order to help me through this entire ordeal. I have been very fortunate. There are not enough words to express my gratitude. Thank you Mandy!
Love,
Denise
Friday, March 12, 2010
Breast MRI
Hi everyone,
I underwent a breast MRI and abdominal CT scan this past Monday. My sister and mother patiently waited for three hours at SCCA, being kind and supportive as always. I had been nervous and real depressed. This past Sunday the three of us attended a meeting through FORCE (Facing Our Risk of Cancer Empowered). We met three other women who are BRCA 1 mutation positive. Networking with other women who also face the uncertainty of when breast cancer arrives is very helpful. One woman had a prophylactic mastectomy because she had already had breast cancer before her genetic testing. Another woman had also gone through Ovarian Cancer surgery and chemo in a very similar scenario to myself. Another woman has tested positive, had ovarian cancer and plans to have a prophylactic mastectomy.
I received a call yesterday that my breast MRI was "good" and that I would be receiving a letter as to the recommended follow-up. I was so relieved, so grateful, and thanked God above. This gives me hope for my other family members who have the genetic mutation. I am the oldest sibling, so I pray that my younger siblings would also be negative for any findings.
Now I wait for my appointment with my gynecology oncologist on March 18th to review my abdominal CT scan and bloodwork. I am relieved to know now that I will be in a "surveilance" program for life at SCCA. As much as it drives me crazy to have so many medical appointments, I need the support and would have panicked if there were no such program.
I will let you know about the letter. For now I am focusing on recovery. I am so weak, low endurance and very depressed. I have started an antidepressant, but it takes almost a month for the effects to kick into full gear. So each day I do a little more, but I feel "cloudy". I have trouble concentrating and really have no motvation. I pray that I get more motivated as time passes, with spring around the corner, I should improve.
I will get to receive some physical therapy to work on my scar tissue and strength towards the end of March. Wonderful.
Now I am ready to be more supportive to my siblings. I love them dearly.
Bye for now.
I underwent a breast MRI and abdominal CT scan this past Monday. My sister and mother patiently waited for three hours at SCCA, being kind and supportive as always. I had been nervous and real depressed. This past Sunday the three of us attended a meeting through FORCE (Facing Our Risk of Cancer Empowered). We met three other women who are BRCA 1 mutation positive. Networking with other women who also face the uncertainty of when breast cancer arrives is very helpful. One woman had a prophylactic mastectomy because she had already had breast cancer before her genetic testing. Another woman had also gone through Ovarian Cancer surgery and chemo in a very similar scenario to myself. Another woman has tested positive, had ovarian cancer and plans to have a prophylactic mastectomy.
I received a call yesterday that my breast MRI was "good" and that I would be receiving a letter as to the recommended follow-up. I was so relieved, so grateful, and thanked God above. This gives me hope for my other family members who have the genetic mutation. I am the oldest sibling, so I pray that my younger siblings would also be negative for any findings.
Now I wait for my appointment with my gynecology oncologist on March 18th to review my abdominal CT scan and bloodwork. I am relieved to know now that I will be in a "surveilance" program for life at SCCA. As much as it drives me crazy to have so many medical appointments, I need the support and would have panicked if there were no such program.
I will let you know about the letter. For now I am focusing on recovery. I am so weak, low endurance and very depressed. I have started an antidepressant, but it takes almost a month for the effects to kick into full gear. So each day I do a little more, but I feel "cloudy". I have trouble concentrating and really have no motvation. I pray that I get more motivated as time passes, with spring around the corner, I should improve.
I will get to receive some physical therapy to work on my scar tissue and strength towards the end of March. Wonderful.
Now I am ready to be more supportive to my siblings. I love them dearly.
Bye for now.
Thursday, February 25, 2010
Branching off on a new road
I am finally starting to feel a bit more energy, recovering slowly from 6 months of chemotherapy. Abdominal pain seems to be a chronic issue that I will now face every day for the rest of my life. Tomorrow my mother will join me with my sister to meet a new doctor that will address the new threats related to BRCA 1 mutation. I remain terrified and my sister, God Bless her, remains positive and strong.
A friend wrote to me to say that we are blessed to have received the testing and now we can at least have an opportunity to alter the predicted course of our lives. We have an opportunity to thwart off breast cancer. I am so grateful that we have this chance and at the same time am overwhelmed with what it means to actively thwart the threat of breast cancer. I don't want any more chemo. I don't want any more surgery. I don't want to have to do costly MRIs every 6 months, but what I want has no bearing on what may be needed.
I would give anything to save my sister from facing any of these decisions. I ask "why".
I kindof feel that of all the options, I'd rather have a prophylactic mastectomy than more chemo. But I can let go of my breasts because I'm still in the dark as to my overall life expectancy. I see my gynecology oncologist on March 18th. I won't have a clue as to my future until that day. If my ovarian cancer has shortened my overall life expectancy, than how important is it to address breast cancer anyway.
How important are my breasts? My family is more important to me. It is more important that because my sister does not currently have cancer, my brother does not have cancer, that they get the best possible consultation and land on the best possible path to prevent cancer. I am obviously depressed. It is so hard for me to comprehend a future for me. I can't see it right now, but I want to be here. I want to see my family every day and be a part of their lives.
I just completed a form for the new breast cancer doctor that involves attitudes toward the threat of cancer. I think that this new doctor will hopefully prescribe an anti-depressant. I have historically been opposed to anti-depressants for me personally, but this is situational depression. I think that they will help me a little bit so that I can get through this new challenge. I don't want to stay on them.
These are my thoughts for today.
On a side note:
I am watching the health care summit on CNN and wondering why there's a debate. When will we elect officials who value life from womb to tomb? The extreme right wing is so hypocritical. I believe health care is a right and that we must move forward with reform, one way or another.
For 10 years I went without health insurance. And for several more years I paid over $300 per month for junk plans that really covered very little. Now I finally have good insurance and am fortunate to have insurance. Every human being deserves the opportunity to have medical treatment, period.
A friend wrote to me to say that we are blessed to have received the testing and now we can at least have an opportunity to alter the predicted course of our lives. We have an opportunity to thwart off breast cancer. I am so grateful that we have this chance and at the same time am overwhelmed with what it means to actively thwart the threat of breast cancer. I don't want any more chemo. I don't want any more surgery. I don't want to have to do costly MRIs every 6 months, but what I want has no bearing on what may be needed.
I would give anything to save my sister from facing any of these decisions. I ask "why".
I kindof feel that of all the options, I'd rather have a prophylactic mastectomy than more chemo. But I can let go of my breasts because I'm still in the dark as to my overall life expectancy. I see my gynecology oncologist on March 18th. I won't have a clue as to my future until that day. If my ovarian cancer has shortened my overall life expectancy, than how important is it to address breast cancer anyway.
How important are my breasts? My family is more important to me. It is more important that because my sister does not currently have cancer, my brother does not have cancer, that they get the best possible consultation and land on the best possible path to prevent cancer. I am obviously depressed. It is so hard for me to comprehend a future for me. I can't see it right now, but I want to be here. I want to see my family every day and be a part of their lives.
I just completed a form for the new breast cancer doctor that involves attitudes toward the threat of cancer. I think that this new doctor will hopefully prescribe an anti-depressant. I have historically been opposed to anti-depressants for me personally, but this is situational depression. I think that they will help me a little bit so that I can get through this new challenge. I don't want to stay on them.
These are my thoughts for today.
On a side note:
I am watching the health care summit on CNN and wondering why there's a debate. When will we elect officials who value life from womb to tomb? The extreme right wing is so hypocritical. I believe health care is a right and that we must move forward with reform, one way or another.
For 10 years I went without health insurance. And for several more years I paid over $300 per month for junk plans that really covered very little. Now I finally have good insurance and am fortunate to have insurance. Every human being deserves the opportunity to have medical treatment, period.
Tuesday, February 16, 2010
clouded celebration with BRCA 1 mutation
This Thursday I will receive what is supposed to be my last Taxol treatment. On the same day, my Uncle Rich will receive his final radiation treatment. I am very happy for Uncle Rich. I just wish I was not so depressed.
My sister and I will be joined together at the hip on this last visit for chemo, and I will be embracing her support. It sounds strange, but I will miss our routine. I cannot for the life of me find anything valuable enough to return the energy, but I am looking.
Our celebration is clouded with recent unexpected news related to my genetic testing. I have tested positive for the BRCA 1 genetic mutation, and unfortunately so has my beautiful sister. The BRCA 1 genetic mutation occurs in both males and females, and indicates an increased risk for both ovarian and breast cancer.
I cannot remember if I have mentioned this yet. For the longest time I blamed myself for having ovarian cancer, wondering what I had done to my body, what did I do to deserve this. The genetic test results are a scary wake up call to our family and truly overwhelming.
My sister has the best and healthiest attitude, to take things a day at a time. Our next step is to visit the breast imaging center and most likely be scheduled for a breast MRI. Regular mammograms are not sufficient testing techniques when there is a known genetic mutation.
Our mother looked up some interesting and important history on the BRCA 1 mutation: I hope the above link takes you there. http://www.smithsonianmag.com/science-nature/san-luis-valley.html?c=y&page=1
I feel a bit paralyzed, and think I will need antidepressants. I can barely commit to 5 minutes on the treadmill, still feel like a tire ran over my stomach, and can't imagine my life in 3 months or 6 months.
The only energy that drives me is that I need to pray for my sister and brother, my mother and all my relatives that noobody else has the mutation. I will be praying diligently for my sister. She is the most amazing person I know with a wonderful husband and two beautiful girls from China. My mother inspires me every day to be a better person, as I see how she plugs away at life in spite of brittle diabetes. Every day is a challenge here at home for us all and I can't bear any more news of any more cancer in our family.
So we will get our MRIs and pray, and deal and cope and pace our responses. We will love and support each other through this time.
I love my family so much and hope that I will serve them well in the future. Still ascertaining my calling. I can only take things one day at a time here.
Love,
Denise
My sister and I will be joined together at the hip on this last visit for chemo, and I will be embracing her support. It sounds strange, but I will miss our routine. I cannot for the life of me find anything valuable enough to return the energy, but I am looking.
Our celebration is clouded with recent unexpected news related to my genetic testing. I have tested positive for the BRCA 1 genetic mutation, and unfortunately so has my beautiful sister. The BRCA 1 genetic mutation occurs in both males and females, and indicates an increased risk for both ovarian and breast cancer.
I cannot remember if I have mentioned this yet. For the longest time I blamed myself for having ovarian cancer, wondering what I had done to my body, what did I do to deserve this. The genetic test results are a scary wake up call to our family and truly overwhelming.
My sister has the best and healthiest attitude, to take things a day at a time. Our next step is to visit the breast imaging center and most likely be scheduled for a breast MRI. Regular mammograms are not sufficient testing techniques when there is a known genetic mutation.
Our mother looked up some interesting and important history on the BRCA 1 mutation: I hope the above link takes you there. http://www.smithsonianmag.com/science-nature/san-luis-valley.html?c=y&page=1
I feel a bit paralyzed, and think I will need antidepressants. I can barely commit to 5 minutes on the treadmill, still feel like a tire ran over my stomach, and can't imagine my life in 3 months or 6 months.
The only energy that drives me is that I need to pray for my sister and brother, my mother and all my relatives that noobody else has the mutation. I will be praying diligently for my sister. She is the most amazing person I know with a wonderful husband and two beautiful girls from China. My mother inspires me every day to be a better person, as I see how she plugs away at life in spite of brittle diabetes. Every day is a challenge here at home for us all and I can't bear any more news of any more cancer in our family.
So we will get our MRIs and pray, and deal and cope and pace our responses. We will love and support each other through this time.
I love my family so much and hope that I will serve them well in the future. Still ascertaining my calling. I can only take things one day at a time here.
Love,
Denise
Friday, February 12, 2010
Almost done
I need to thank Mandy again for being so helpful in being with me during chemo. I want to thank my mom also for always being there to help my needs at home. I have been depressed.
Next Thursday I go for my final scheduled chemo. I see my oncologist in March and in March I will be able to ask my oncologist about my status and follow-up care. I am so lost as to my calling and can only pray that I will find a home doing something good for others.
My goal for now is to finish chemo and get my digestive health in order. Last time around I almost wound up with a bowel obstruction and am absolutely paranoid of the whole thing. It is a battle. I used to be all well in that department. The nurses say that the chemo negatively affects your digestive health, so hopefully in a few weeks I can get a better handle on it.
In the mean time I am fighting my depression and trying to get prepared for the next battle. I love my sister so much and we will fight this together.
Love,
Denise
Next Thursday I go for my final scheduled chemo. I see my oncologist in March and in March I will be able to ask my oncologist about my status and follow-up care. I am so lost as to my calling and can only pray that I will find a home doing something good for others.
My goal for now is to finish chemo and get my digestive health in order. Last time around I almost wound up with a bowel obstruction and am absolutely paranoid of the whole thing. It is a battle. I used to be all well in that department. The nurses say that the chemo negatively affects your digestive health, so hopefully in a few weeks I can get a better handle on it.
In the mean time I am fighting my depression and trying to get prepared for the next battle. I love my sister so much and we will fight this together.
Love,
Denise
Thursday, January 28, 2010
coping with more pain
I am still having abdominal pain from my surgery in July of 2009. Today is a bad day. I have been battling nausea all weak, along with fatigue. I am the queen of couch potatoes. I just don't want to do anything.
I go again for chemo tomorrow, scheduled to receive Taxol. I have to admit I am weary of the chemo and pain. I am tired of micro-managing my diet and not being able to eat certain foods. The thing is though that my mom suffers more. Her diabetes is so fragile, yesterday all she could eat was a bowl of soup because her blood sugar levels stayed high. This is despite her giving herself more insulin. I feel like she is starving sometimes and it pains me to see her suffer.
It doesn't help that seemingly every TV show, commercial and event is centered around food. Food is an obsession in this country. In Haiti, people are becoming so weak from lack of food that they are not able to carry their own bags of rice and beans. Juxtaposed against the horrific scenes unfolding on the island are fast food bargains, restaurant commercials, and grocery advertisements. Pizza commercials reign.
I pray every day for the people in Haiti, I pray for my mom to be able to just eat like a normal person and have a meal. I pray my sister can do the same. I just want my pain to go away. I am tired.
My chemo will start wrapping up towards the end of February, and that will make a grand total of about 6 months of self poisoning to rid myself of any traces of ovarian cancer. I am still searching for my calling and praying for those that I love to be safe, healthy and happy. We all deserve a life fulfilled. We need to contribute. We need to be needed, that is our nature.
Love,
Denise
I go again for chemo tomorrow, scheduled to receive Taxol. I have to admit I am weary of the chemo and pain. I am tired of micro-managing my diet and not being able to eat certain foods. The thing is though that my mom suffers more. Her diabetes is so fragile, yesterday all she could eat was a bowl of soup because her blood sugar levels stayed high. This is despite her giving herself more insulin. I feel like she is starving sometimes and it pains me to see her suffer.
It doesn't help that seemingly every TV show, commercial and event is centered around food. Food is an obsession in this country. In Haiti, people are becoming so weak from lack of food that they are not able to carry their own bags of rice and beans. Juxtaposed against the horrific scenes unfolding on the island are fast food bargains, restaurant commercials, and grocery advertisements. Pizza commercials reign.
I pray every day for the people in Haiti, I pray for my mom to be able to just eat like a normal person and have a meal. I pray my sister can do the same. I just want my pain to go away. I am tired.
My chemo will start wrapping up towards the end of February, and that will make a grand total of about 6 months of self poisoning to rid myself of any traces of ovarian cancer. I am still searching for my calling and praying for those that I love to be safe, healthy and happy. We all deserve a life fulfilled. We need to contribute. We need to be needed, that is our nature.
Love,
Denise
Tuesday, January 19, 2010
Inspired by the people of Haiti
Today I am thinking about the horrific plight of the survivors in Haiti. Consumed with their struggle and the struggle of their saviors. Frustrated by the inherent beaurocracy that comes along with large organizations spending too much time planning and assessing and not enough time doing. I know that they are doing as best they can, but when I heard yesterday that yet two more planes from Doctors Without Borders had been diverted or refused access to the airport in Port-au-Prince, I felt so so sad. Reporters are stepping in to hold officials accountable, but there really is no responsible body of government. The Haitian government is incapable and needs help to operate. I pray all day that the supply lines are freed and that effective distribution and delivery of aid and medical help becomes a reality to help the people of Haiti. We have a long way to go.
So as I get up and manage each day, dealing with the anxiety of my upcoming hospitalization, I am inspired to be better, do better, live better and cope. The people of Haiti are only surviving because of their sheer will and faith in God. We hear them singing prayer songs in the background as newscasters try to somehow paint a picture of the horror on the ground. Their songs give me hope. May we all continue to pray for the people of Haiti. They are going to need our prayers for a long time to come. To the people of Haiti, I love you.
So as I get up and manage each day, dealing with the anxiety of my upcoming hospitalization, I am inspired to be better, do better, live better and cope. The people of Haiti are only surviving because of their sheer will and faith in God. We hear them singing prayer songs in the background as newscasters try to somehow paint a picture of the horror on the ground. Their songs give me hope. May we all continue to pray for the people of Haiti. They are going to need our prayers for a long time to come. To the people of Haiti, I love you.
Saturday, January 16, 2010
More on Haiti
Today we finally see trickles of support in the form of food and water being sparsely distributed to the poor souls of Haiti. The people of Haiti have been their own rescue workers and heroes. It was tragic to see a group of doctors pull away from their newly established tent to leave CNN's Dr. Sanjay Gupta hatted with servicing the medical needs of almost 30 severly wounded Haitians. Why do these atrocities happen? The desire to "organize" has almost crippled the most essential needs to get immediate help to the people. But, I am not there. I am here. All of the world is watching, praying for a path to open up for the flood of international humanitarian aid. I must restate my praise to God for granting me life and for the lives and safety of all my loved ones and friends. Each day I pray. May we all continue to pray for the safety and well being of our beloved Haitians and for the speedy distribution and execution of international aid efforts. God Bless the people of Haiti.
Thursday, January 14, 2010
We cry for Haiti
A few days ago I had planned on filling you in on my progress, then the devastating quake hit Haiti. If you are like me, you have been glued to the internet or television, praying for relief to the poor people of Haiti. It is surreal, heartbreaking, overwehlming, tragic. We are helpless save for a small donation to the red cross or other charitable organization.
What is more tragic is the realization for our saviors that the harbor is damaged, and the airport can only manage minimal air traffic. We need thousands of small boats to rush to shore with doctors, rescue teams, food, water, medicine and shelter supplies now. Distributing aid is a logistical nightmare and our best seems incapacitated to do anything. Haiti's President is homeless, has no post from which to command and the United Nations building is collapsed. Nobody is really in charge. The people are crying, screaming, suffering, bleeding and dying as I write. All nations need access to help the Haitian people, this is no time for politics or restrictions.
I saw on CNN how one doctor flew small plane to Haiti, rescued several people, provided immediate medical aid and flew them back to Miami. One doctor! Amazing. I know that some rescue efforts have started, supplies are arriving, and possibly hundreds or thousands of people are "on deck" to go to Haiti, but are being tangled in the beaucracy of managing the damaged points of entry created by the quake. Is there a way to launch hundreds or thousands of smaller boats that encroach upon the beaches to deliver the doctors, rescuers and much needed supplies now?
I am already probably clinically depressed and simply watching the coverage of the quake is probably not good for me but this is what is actually happening with me. I see the horror and feel eternally grateful for my loved ones, my meals, my shower, my clothers, my bed, my toothbrush, my medication, my doctors, my friends, my shelter, my drink. I feel so grateful and yet again am so so challenged to find a way to be a positive value to the world.
I struggle with manipulative insurance agents, criminal ex-landlords, fatigue beyond measure, depression, fighting with the psychiatric intern and all of these struggles are so so trivial in comparison to the plight of the people in Haiti.
Today I vow to be a little happier and more appreciative and pray that I can find my calling so that my life will not be useless to others. In the mean time, like you, I will be anxiously watching the news as the tragedy unfolds and praying somehow we are able to provide real relief literally in minutes, hours and days. There is no more time. They are dying. God Help Us All and reach down to the Haitians and their rescuers to lift them on your wings to safety.
Love,
Denise
What is more tragic is the realization for our saviors that the harbor is damaged, and the airport can only manage minimal air traffic. We need thousands of small boats to rush to shore with doctors, rescue teams, food, water, medicine and shelter supplies now. Distributing aid is a logistical nightmare and our best seems incapacitated to do anything. Haiti's President is homeless, has no post from which to command and the United Nations building is collapsed. Nobody is really in charge. The people are crying, screaming, suffering, bleeding and dying as I write. All nations need access to help the Haitian people, this is no time for politics or restrictions.
I saw on CNN how one doctor flew small plane to Haiti, rescued several people, provided immediate medical aid and flew them back to Miami. One doctor! Amazing. I know that some rescue efforts have started, supplies are arriving, and possibly hundreds or thousands of people are "on deck" to go to Haiti, but are being tangled in the beaucracy of managing the damaged points of entry created by the quake. Is there a way to launch hundreds or thousands of smaller boats that encroach upon the beaches to deliver the doctors, rescuers and much needed supplies now?
I am already probably clinically depressed and simply watching the coverage of the quake is probably not good for me but this is what is actually happening with me. I see the horror and feel eternally grateful for my loved ones, my meals, my shower, my clothers, my bed, my toothbrush, my medication, my doctors, my friends, my shelter, my drink. I feel so grateful and yet again am so so challenged to find a way to be a positive value to the world.
I struggle with manipulative insurance agents, criminal ex-landlords, fatigue beyond measure, depression, fighting with the psychiatric intern and all of these struggles are so so trivial in comparison to the plight of the people in Haiti.
Today I vow to be a little happier and more appreciative and pray that I can find my calling so that my life will not be useless to others. In the mean time, like you, I will be anxiously watching the news as the tragedy unfolds and praying somehow we are able to provide real relief literally in minutes, hours and days. There is no more time. They are dying. God Help Us All and reach down to the Haitians and their rescuers to lift them on your wings to safety.
Love,
Denise
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