Update for doc #1

Mom and dad met with the oncologist yesterday. Not a lot of info was gleaned from the conversation. We found out there were several lymph nodes enlarged (15-30%). None of them are on vital tissue, organs or any other place. Which makes it easier if mom chooses surgery to remove them.

Mom now has decided NOT to do the IP. I talked to dad briefly, and not mom, so I don't know what happened there...if the doctor didn't think it would be more beneficial, or if the doctor said it was extremely hard on the body. Doesn't matter...she's not doing it.

So now, dad and the doctor are looking at a clinical trial in Denver to make sure the medication mom is currently on won't keep her out of the trial. It looks like we still have to wait until 3 months for the pet scan, and for more time in between the chemo treatments. However, mom and dad will meeting with another doctor on Friday, and we might hear more from her. There are other clinical trials throughout the country, too, that dad is looking at. It all matters what is most beneficial and what could yield the best results. Avastin was brought up, because her oncologist has seen good results from the usage of it.

I talked to mom yesterday before her appointment and she sounds good. I tell you people, prayer works. Her spirits were a LOT higher. She wants to fight, she doesn't want to die. She said she needs to hear positive thinking. I would suggest to NOT have the words, "I'm sorry" come out of your mouth if you talk to her. I know it's easy for it to spill (because you ARE sorry!!) but focus on what's next...and keep her busy. She's going to have a few months to have to sit and wait.

I am most sad that it sounds like mom and dad's Scotland trip has been temporarily put on hold. It's all in the timing. Last chemo, the last two treatments were very hard and took longer to bounce back. If she starts in June, it's getting close to the September mark for her final treatments.

As for me and how I am dealing...need to go to the doctor for anxiety. My stomach is upset all of the time. Just anxious and not feeling all that great. As time goes on, I am hoping it will get easier. I just don't know.

Keep praying!!

It hasn't stopped, the fear

Mom goes in for her CA125 and Pet scan today. Every three months, like clockwork. I really, really try to be optimistic, but know we all will be devastated to hear bad news. She decided to go in today so she could hear results tomorrow and not have to wait the weekend. I also appreciate that. I can't stand the waiting game.

I, along with other cousins, have been coordinating our reunion for this year. It had been mentioned to maybe put it off for another year because it was getting hard to find a place. In the back of my mind, no matter how much I tried not to listen to it, was the thought that we might not HAVE another year. Make the time important! Make it happen!! So, we made it happen and will all be gathering in June.

I don't think of the cancer daily. I can go several days without thinking of it. However, when I hear that a friend's cancer came back, it hits me like a ton of bricks. When I have friends dying, it brings me to tears for so many reasons.

I hate cancer.

Results

I received a couple of phone calls from mom this past week but have been waiting to tell the results of her tests until we heard everything.

Mom had her CT Scan and it was clear! She had her CA125 counts come back and they had gone down to 5! This news makes us all breathe a little easier, and allows the cancer to go a little further back into our minds. Remission is such a two-edge sword. You are so happy that she's in remission, but it's not "cured" for 5 whole years. We are so grateful for the news and are trying to train ourselves to be happy with what we've got!

Mom's energy is coming back strong as she does physical therapy. Her leg pain is less, she has feeling in all of her limbs. She's hoping the "chemo brain" gets better in time because she gets very frustrated at the loss of her short term memory. All in all, an EXCELLENT report and we are very happy!

My mom has HAIR!

Saw it with my own eyes. It's beautiful.

Things of Importance..Relay for Life

RELAY FOR LIFE IN BRIGHTON---FRIDAY JULY 10, 2009

Lace up and start walking at 6:00 p.m. at the Brighton Recreation Center to honor cancer survivors and caregivers, pay tribute to those who have lost their battle with cancer and empower everyone to fight this disease!!

If interested, please call Dee Durland/chairperson at 303-289-1453 for more information...or to make a generous donation.



I will be walking this and would love some people to walk with! Call me if you're interested, and I'll set this up.

In honor of Connie Sutton, ovarian cancer survivor.

Mom update

I was told by several people that I haven't had any updates about mom written here. Well, it's because there's not a lot to update you with. I talked to her last night and she reports, "I still have leg pain, I still have neuropathy in my hands, and I'm still bald".

The leg pain gets bad in the evenings, and she's trying so hard not to use strong, prescribed medicine to get through it. Since she had fibromyalgia before her chemo, she isn't sure if it's that, or the taxol in her system. I'm guessing taxol, but that's only a guess.

As for her hair, I know it takes awhile for it to come back, but I'm really praying that it takes root soon...she's desperate for her hair to be back!

Her next Avastin treatment is the 10th, and she goes in for a womanly check-up today. She can't remember why she goes in for that since there's "nothing there anymore" but we'll find out today.

Her days are pretty good, but she still tries to take it easy since she gets tired so easily. All in all, things are the same.

Waiting time

I was lucky enough to go and visit my parents yesterday for about four hours. Mom is doing pretty good. Even though she doesn't feel great, her spirits are higher. It's because she knows she's done! We talked of eating steaks and salads and hopefully celebrating her "birthday"...which is day one of remission. Mom has her CT Scan on Thursday, and then in two weeks she'll have her CA125 results. If the scan looks good and her numbers went down, they should give us the good news. With the way the numbers have been going, and the fact the treatments seem to be working, dad and I figure her CA125 number should be at 11. It's going to be a long two weeks to hear that number!

We then talked about mom continuing her Avastin trial (if it is, indeed, Avastin) and other options that might be coming up in other trials. Most importantly, we talked about getting her strength up because she is so weak. The prayers seem to be working...mom and dad seem to be getting along well. I thank you so much for all of your thoughts! I promise I will let you know the results as soon as they come in.

Too much time to think

It's been snowing here. A lot. It's been worse here in CO, but as it snows it gives me too much time to think. I've tried to stay busy with my job and online, doing laundry, keeping the boys busy...but things still creep in.

I watched Grey's Anatomy last night and the week before. The storyline is one of the main charachter has Stage 4 cancer (I still can't figure out what they are calling it...melanoma?) It's in the brain and throughout her body. The obvious futility of the situation is mind boggling and I can hardly get through the show without tearing up or sobbing, sometimes both.

This week has been hard for my mother. The shot they gave her to keep her white cells active gave her a migraine for four days. The only thing that would even touch the pain was a whole Percocet, and then that can make her dizzy and sick to her stomach. I went over there on Sunday and I offered her my touch, my love, words of encouragement. They never are enough.

As of yesterday, she was feeling better, which is good. I can't stand that the chemo has put her life on hold, yet understand that it needs to be done. I was thinking of Mother's Day coming up...and felt a sense of loss knowing that she and I most likely won't get together like we've done every year to pick out our annuals for potting up our containers because she doesn't have the energy to be able to do it. I was thinking about my birthday and my son's birthday...and not sure if she'll be able to celebrate it with us.

I'm being selfish. I want her full of life, with energy, feeling good...and I can't have that.

I just want her back.

Wishing

I wish...

I could roll back time and never had it happen.

I could take all of your pain, squish it into a ball, and we burn it...slowly.

I could make everything better

I could spend more time with you

it was over before it began

it will never come back

you felt better about what you look like

you felt better. Period.

he understood your needs more

that you were well

that you would never leave me

that you truly knew how much I love you

Great news!!

Mom got the results of her CA125, and her numbers have dropped to 28. The chemo is working. All we can do is pray she goes into remission after all of this is over with, and it looks like she is heading in the right direction!! She still has two more chemo treatments to go, so keep praying for her!

I am so relieved and excited at once.

Chemo 4?

This week has been a rough one. Mom had her CT scan on Monday and I've been jittery and impatient to get the results. I don't talk a lot about the fear because it's always hard to express. Mom called me yesterday to make sure I wasn't going to her chemo because her white blood counts were low and they weren't going to give it to her this week. I was concerned for how she would take this news, but she is fine with it "another week where I can eat what I want". Ha ha. We also received the results of her CT scan. There is still a bit of fluid on the bottom part outside of her lung. We're guessing when they drained her, it didn't get it all out. As far as we know, it hasn't effected her breathing, and the doctor will continue to monitor it throughout the chemo. Mom also had a lymph node that was smaller...something else to keep tabs on. When I heard "lymph node" my breath started to come in and out fast. I know that when it hits the lymph nodes it can be very bad, but dad assured me it was a good CT scan. The doctors have decided to give mom a shot after her chemo to help her white cells work faster at reproducing. With this could come more leg pain, and that makes everyone wary, but she has to have the chemo...

We've decided that instead of me going to her chemo rounds, I would come over on Sunday's after chemo and spend time with her. This would allow my dad to go to church and Sunday School, and for mom to be taken care of. Sunday is one of the worst days for mom. Heavy medications and lot of leg pain. Again, the need to help is overwhelming, and I am glad to offer anything to make things better.

I'll be working at Picadilly today and tomorrow. Potting a whole bunch of perennials and maybe even vegetables. It's long, laborous work, but my hands are immersed in the soil so I am happy. A good distraction from the long week.

3rd round chemo

Today I spent the day at the Front Range Cancer Center hanging with mom, Aunt Marsha and dad for 6 hours. We're half way done. Only 3 more to go of the heavy chemo, and then 16 more Avastin treatments (if she's getting Avastin...we're still not sure).

Things went much better this time; she had taken a Percocet and had no pain in her legs. I have to say that I'm on pins and needles because I still am not sure mom will continue with the heavy amounts of Taxol in her body. I keep waiting for her to say, "enough is enough" and ask to lower the dosage and we know it's working because her CA 125 counts were in the 40's compared to the hundreds!! Great news!! I know it is her decision and will support her no matter what, but I want the chemo to kill the "son's of bitches" and quickly.

Mom has another Cat Scan coming up and I can tell she's afraid they'll find more cancer. The last one she had was when they found the fluid in her lungs with cancerous cells, so I can't say I blame her for worrying. I just pray that it will go fine and they don't find anything. She needs some good news...to see the chemo is worth the hell that it brings.

Fuzzy

Mom and dad came over on Monday because I went to the airport to pick up Aunt Marsha, and mom wanted to meet her with me. Mom was wearing a wig. She looked good, but I could tell she wasn't comfortable. Before she left, I told her that I wanted to see her au natural. She took the wig off and looked at me expectantly. I have heard that losing your hair during the chemo can be the most traumatic thing of all, and I couldn't imagine it, so I steadied myself for the worst. But when I saw the small, fuzzy head, the two words I thought of were survivor and hero. I did not cry. I held her and told her she was beautiful.

Staggering statistics (ie. why more money should go to Ovarian Cancer research)

Brought to you by the Ovarian Cancer National Alliance

Each year, approximately 20,000 American women are diagnosed with ovarian cancer and about 15,000 women die of the disease. In 2008, it is estimated that 21,650 women in the United States will be diagnosed with ovarian cancer and 15,520 women will die from the disease.

Malignant ovarian cancer incidence and death counts
Year
Incidence Count
Mortality Count

2005
22,220
15,0321


2004
20,095
14,716

2003
19,871
14,657

2002
19,177
14,682

2001
19,123
14,414

2000
19,896
14,060

1999
19,556
13,627

Prevalence
Approximately 174,236 women living in the United States have or have a history of ovarian cancer.

Lifetime risks
One in 72 women will develop ovarian cancer (lifetime risk).
One in 95 women will die from ovarian cancer.
A woman’s lifetime risk of developing ovarian cancer is 1.39 percent.
A woman’s risk of developing ovarian cancer and dying from it is 1.05 percent.

Survival and stage at diagnosis
The overall five-year relative survival rate for all women with ovarian cancer is 46 percent. This means that compared to women in the general population, five years from the time of diagnosis only 46 percent of women with ovarian cancer are still alive.
However, the survival rate improves greatly to 93 percent if the cancer is diagnosed at an early stage before it has spread. Only 19 percent of ovarian cancer cases are diagnosed at this local stage.
Approximately 75 percent of ovarian cancer cases are diagnosed at an advanced stage after the cancer has spread beyond the ovary.
The five-year survival rate for women with ovarian cancer has not significantly increased in the past 30 years—a mere 8 percent.
Women diagnosed with ovarian cancer from 1975 to 1979 experienced a five-year survival rate of approximately 38 percent. Today this rate is approximately 46 percent.
Ovarian cancer survival rates have not improved as significantly as those of some other cancers that affect primarily women. For example, women diagnosed with breast cancer from 1975 to 1979 experienced a five-year survival rate of 75 percent and today this rate is 89 percent.

Recurrence
The issue of ovarian cancer recurrence is complicated. Research suggests that between 70 percent to 90 percent of all women with ovarian cancer will, at some point, have a recurrence of their disease. The risk of recurrence varies based on multiple factors, including the stage at diagnosis.

Approximately 90 – 95 percent of patients with stage IV ovarian cancer will have a recurrence at some point.
Approximately 80 – 85 percent of patients with stage III ovarian cancer who are suboptimal (a large volume of residual tumor remains after initial surgery) will have a recurrence.
Approximately 70 – 80 percent of patients with optimal stage III ovarian cancer will have a recurrence.
Approximately 30 percent of patients with stage II ovarian cancer will have a recurrence.
Approximately 10 percent of patients with stage I ovarian cancer will have a recurrence.
Improvements in therapy are resulting in later recurrences. However, researchers are now trying to determine whether the treatments are just delaying the recurrence or whether fewer patients overall are having recurrences.

Background:
None of the registries track this information. It has been gleaned from research articles by Deborah Armstrong, MD of our Scientific and Medical Advisory Committee. The overall number is also in the Johns Hopkins Pathology, education piece on “Treatment of Recurrent Disease”
*Note: This was published in 2002 and is the most current information available.

Age at diagnosis and death
From 2001 to 2005, the most recent period for which data is available, the median age at diagnosis for ovarian cancer was 63 years.
Approximately 87 percent of the women who are diagnosed with ovarian cancer are 45 years or older.
Approximately 68 percent of the women who are diagnosed with ovarian cancer are 55 years or older.
Approximately 32 percent of the women who are diagnosed with ovarian cancer are 54 years or younger.
Approximately 13 percent of women who are diagnosed with ovarian cancer are 45 years or younger.
From 2001 to 2005, the most recent period for which data is available, the median age at death for ovarian cancer was 71 years.
Rank in relation to other cancers: incidence (PDF)
Ovarian cancer is the eighth most common cancer among women in the United States.(2004)


Rank in relation to other cancers: mortality
Ovarian cancer is the fifth leading cause of cancer-related death among U.S. women.

Ovarian cancer has remained the fifth leading cause of cancer-related death among U.S. women since 1999.
Mortality rates are slightly less for minority women than for Caucasian women.
Trends in incidence and mortality
Over the past decade there has been a slight decrease – less than 1 percent per year – in ovarian cancer incidence rates, however, during the same time, the actual incidence numbers increased by approximately 3,000 women.
During most of the past decade (1996 to 2005), the ovarian cancer mortality rate has remained stable.
The breast cancer mortality rate has decreased 2.2 percent per year (1990 to 2005) and the cervical cancer mortality rate has decreased 3.4 percent per year in a similar time period (1995 to 2005).

Early Detection
Early detection of ovarian cancer can save lives. There are two main barriers to early diagnosis – the lack of an ovarian cancer screening test and a lack of ovarian cancer awareness.
Lack of Screening Test – It is important to note that the Pap test does not screen for ovarian cancer; it screens for cervical cancer and some infections. There is currently no test that exists for ovarian cancer that can be used on all women to screen for the disease, such as mammograms for breast cancer and the Pap test for cervical cancer. Methods are being researched to monitor women at high risk for the disease but currently no test exists to screen all women in the general public.

Lack of Awareness – Few women know enough about ovarian cancer and increased awareness is needed among medical professionals. Right now the best chance for early detection is to raise awareness about ovarian cancer among women and the health care community.

Current recommendations
Currently no routine screening test exists for ovarian cancer. If a woman is experiencing ovarian cancer symptoms or has a strong family history or genetic predisposition such as a BRCA mutation, doctors may monitor her with one or a combination of tests:

CA-125 blood test – CA-125 is a protein found in greater concentration in cancerous cells. Although a CA-125 blood test can be a useful tool for the diagnosis of ovarian cancer, it is not uncommon for a CA-125 count to be elevated in premenopausal women due to benign conditions unrelated to ovarian cancer. Uterine fibroids, liver disease, inflammation of the fallopian tubes and other types of cancer can elevate a woman's CA-125 level resulting in a false positive test. The CA-125 test is more accurate in postmenopausal women. However, in about 20 percent of cases of advanced stage ovarian cancer, and 50 percent of cases of early stage ovarian cancer, the CA-125 is NOT elevated, even though there is ovarian cancer present. As a result, the CA-125 is generally one of several tools used to diagnose ovarian cancer. One of the most important uses of the CA-125 test is to evaluate the disease’s progress and tumor response in patients undergoing treatment, and to monitor the levels of women in remission for evidence of disease recurrence. An elevated CA-125 can indicate ovarian cancer; however, as noted above, it may sometimes result in false positives.

Transvaginal ultrasound – A transvaginal ultrasound is a test used to examine a woman’s reproductive organs, mainly: the vagina, the uterus, the fallopian tubes, and the bladder. This is done by inserting a probe into the woman’s vagina. The probe sends off sound waves which reflect off of body structures. The waves are then received by a computer that turns them into a picture the doctor can examine.

Pelvic exam – During this exam a doctor places one or two fingers into a woman’s vagina and another over her abdomen to feel the size, shape and position of the ovaries and uterus. Ovarian cancer is usually in an advanced stage if it is found during a pelvic exam.

2nd Chemo treatment

As I said in an earlier blog, it was a 6 hour treatment that also involved the clinical trial of Avastin. She used a topical ointment to numb her skin over her port, so the hooking up of the IV was a breeze this time...yay! She started having problems pretty soon after taking the Taxol with her legs. First it felt like restless legs, and then the pain came. Sharp pains that effects her knees and legs. Her Taxol treatment is a total of 3 hours, so she was pretty miserable during that, but the other two treatments went fine. She was told she could take a half of a percoset if needed next treatment. I was not able to go due to the fact that I still wasn't sure if I was carrying a virus with me. Mom and dad were exhausted, but mom's not able to sleep well due to the steroid that they give. She doesn't sleep well for the first week after treatment.

Yesterday and today she's been feeling fine. Tomorrow is when things might start acting up. I will be heading out there tomorrow morning because I can't stand staying away any longer!! If you have messages you'd like to leave her, write them here and I'll print them out!

Mom's spirits are up and down which is, of course, completely normal. I just pray that her heart is lifted and she still feels the support she desperately needs during this time.

Missing out

I miss my mom. I haven't seen her since her last chemo treatment because she wasn't feeling great the first week after and then my kids have been sick the last couple of weeks.

Now I think I'm coming down with a cold. I just feel like the only thing I can do to help out is to go with her to her chemo appointment and now I have to miss that. I know dad will be there, but it will be her longest chemo treatment (6 hours) and I hate to miss it. However, talking to mom made me feel a bit better because she knows and I know that it would be terrible for me to go to the cancer treatment center with a cold. I could get a lot of cancer patients sick.

I know I've said it before, but I can't stand that they live so far away. With Riordan in school only half day, I can't just make a run over there, it takes 40 minutes to get there and 40 minutes to get back, and Riordan is only gone for 3 hours. Not enough time.

I also missed celebrating my dad's birthday. He needs some joy and some time off. I'm thinking of going to see Push with him, but I know he's afraid to leave mom for too long.

Brian was sick all day today and sleeping a lot. I didn't get too much done for fear my normal activities would wake him. When he gets sick, it really wipes him out. I'm tired of colds and just wish that everyone would get better!!

Prayer

I talked to my mom a bit the other day about prayer and praying to God that the cancer will go away. She hesitated a bit and said she was unsure to pray for that. We, as believers, talk about praying to God and asking things "according to his will". I, and my mom, have lost a LOT of people to cancer, and they were GOOD people. Fantastic people. People who died too early. It just didn't make sense. We sat over these people and prayed for them daily. Prayed that their cancer would go away. Is this how He wants us to pray????

So, when I pray, I pray that God will keep my mom's spirits up. I pray and beg to Him that my mom has more ministries to give here on Earth than up in Heaven. I pray that my dad can stay strong and will be able to deal with whatever comes his way.

According to His will.

God has a plan for each and everyone of us. We have no inkling what His plan is when it comes to our personal lives. We have to have the belief that He is in control over the situation and we just need to hang on for the ride.

On that note, please keep my friends Lena and Paul in your prayers. Their son goes in for surgery today. He is a baby who will be going under anesthesia.

Dear Lord, I pray that you calm my friend's Lena heart and mind. I pray that baby Austin's surgery goes quickly and effortlessly. I pray that she is surrounded by caring nurses that will say the right things to Lena to help her during the time where she cannot be with Austin. Please, Lord, hear my prayer. I pray this all in your son, Jesus Christ's, name. Amen.

We received the results

of the fluid around mom's lungs. It indeed had cancer. Mom now has Stage IV PPC. She just can't seem to catch a break!

Dad's down...the first time since the beginning and I think we're all trying not to think of the percentages and such that we know that comes with Stage 4 ovarian cancer. I'm just really wishing mom and dad lived closer. I want all the time I can have with the both of them. Short visits don't happen, which means the visits aren't very often.

I don't have a lot more to add. I just felt as if you needed an update.

Heather

Day One

Mom is doing fantastic. She ate several small meals yesterday without any problems of queasiness. She had more energy than she thought she would. Kept it simple, though, just to make sure she didn't wear herself out. The nurse told her not to sit around and think, "When is it going to happen" but to live her life like she did the day before chemo. She has it in her head that tomorrow will be the day of tireds, so just pray for her today and the rest of the week. I have GOT to make something for them to eat that is light and that has no chicken in it. The nurse told mom that for the tired days, she won't feel like eating, but dad will and I want to make sure there's something there for them to snack on. If anybody has any recipes they'd like to shoot my way that is nutritious and tasty, please do so! I am not a cook, but am willing to try...

Mom and I talked about eating more organically and how expensive it is. How do you choose what foods that you change to organic? Living off retirement does not allow you to spend tons of money on food. Does anyone have any good books out there to help newly transformed dieters?

Yesterday was good for me, too. I didn't do alot and I think that I may have staved off the cold. I'll call my dad this morning to see how mom is doing and then call Karen to see if she still needs help with picking out window treatments. The Lollar's move in date is January 31. How exciting!!

Tomorrow Brian and I have a "day date" with each other. Just the two of us. I'm very excited to be able to have the chance to spend time with him.

First chemo treatment

I wasn't there for it all, but I'll give you the rundown about what I heard and then what I saw.

Mom and dad got to the Front Range Cancer center at 9:45 a.m. They started her on the premeds and then laid her down for a massage (how's that for relaxing before chemo??) She then had the needle inserted in her port for the IV which wasn't a pleasant feeling, but after yesterday's pain from the drainage removal, she could handle pretty much anything.

I got to Fort Collins around 12:30. Mom was sitting in her chair quite peacefully. I sat down and we talked the entire time. Dad went out to get some lunch and mom and I talked about what happened yesterday and then she gave me the run down what happened in the morning.

Her chemo treatment consists of two drugs- Paclitaxel and Carboplatin. This is the standard treatment that seems to work the best. The Paclitaxel takes the longest to administer, and then the Carbo takes between 30 minutes to an hour.

Mom's next chemo is scheduled for January 28th. This is when she starts her clinical trial of the Avastin which will add 90 minutes to her overall chemo round. This will be the longest chemo treatment (around 6 hours). She will receive 6 rounds of chemo total with a doctor's visit every week this month (checking her vitals and blood tests). We did get her CA125 which was 130 before her first round of chemo. Dad feels as if the CA125 is a good source to see the cancer levels since it has moved from the original number before the surgery. It didn't move in the right direction (those numbers were around 50-80) but dad assures me it's a positive sign that they can use that test to see if the chemo is working. It doesn't make much sense to me, but I'm new to this and dad's been doing a lot more research than I have. I do know that both numbers are very low compared to other cancer patients with PPC that I have read about. I try not to compare because there isn't much of a point, but I do it anyway. We'll find out in a couple of days why there was fluid (a LITER of fluid!!) on her lungs. Her doctor seems to think it doesn't matter if it's cancer or fluid that collected after her surgery because she has started chemo and it will attack whatever cancer is in her body.

We start the waiting game. In about 48 hours we'll see how her body reacts to the standard chemo. We feel good that her body responded as she was receiving the chemo today (no visible signs of problems) and just pray that everything will be okay this coming week.

Mom's spirits are high and she told me today how she has received multiple letters, emails and phone calls and feels so supported during this time...and that she wouldn't have been able to get this far without the love that you all are showing her. Keep it up!! Keep praying, and know that your prayers are working.