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.

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

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

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.

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.