CDC Symptom Diary Card

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.

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.

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

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

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