Idaho!!!!!

It has been a hard couple of weeks in the cancery world. A couple of my girls are really suffering right now, fighting for their lives and holding to their families. I need the friendship of these ladies. I need their humor and their wisdom. I need their honesty and their help. I find that I do better with a 'virtual' group and these ladies have been an important lifeline for me this last year.

And what a year it has been. After the ctscan craziness of June 2010, I was faced with a return to the carbo/taxol routine. At this time last year, I was wallowing in self pity and bald again. I had sent Richie and C alone to Camp for vacation and the only good thing that seemed to be happening in our lives was that M had made it home safe and sound! But oh, what a difference a year can make.

Wednesday morning, Aug 31, I leave for a six day trip on the Salmon River in Idaho. I am going as a part of the River Discovery organization for cancer survivors. I will be with 14 other women and the staff and crew running this excellent organization. I am still reeling from the unexpected invitation and the speed with which this trip is happening.

I had applied for the program back in February, but was slow in getting my paperwork returned and was put on the waiting list. I felt comfortable that if I was meant to go, it would somehow work itself out and it sure worked itself out! I got a phone call last week from my cousin Ellen. Ellen is a member of the River Discovery organization and she was calling to tell me that a space had opened up for me. Sadly, another woman was not able to go and had to drop out, but that meant I had an opportunity and I grabbed it.

Ellen also helped in making arrangements for me to fly from KC to Boise. My cousin Greg was so generous as to donate some frequent flyer miles and voila! I had transportation.

I am scared, excited, anxious and stressed, but all in a good way. I am mostly worried about being able to keep up with the group. Will we have nap time? (haha) and how will that colostomy care be out in the wild? Ellen says not to worry that she's got a plan and of course, I trust her. So now it's just a matter of going and being, of seeing and enjoying. There is not of lot to enjoy about cancer, but I will enjoy this trip. I will post some photos and tell you all about the trip when I get home.

Just a Tweek!!

Since July 4, 2007 and the start of our lives with cancer, I have always been a little underwhelmed by the holiday and usually just hang at home. Easy. No energy output.

Recent weeks have brought the hot, humid air of a Midwest summer and we’ve succumbed to using the AC. Lovely air conditioning, so that we can all grab a good night’s sleep in order to face the next day.

It’s really been a lovely spring and summer around here so far. We have had lots of rain which saves having to water the plants in the garden and helps the days to cool down.

We’ve finished another school year, this one without any cancer craziness. The kids have both enjoyed a very typical summer. They sleep late, do their jobs, go to the lake with friends and stay up late. Typical, good, reassuring!

This has been a hard holiday for all of us since 2007. We chose the path of least resistance again this year, no plans to celebrate, we’ve enjoyed being home and not putting too many demands on ourselves. But then Sunday morning dawned and we woke up to realize we’d been robbed in the night. A very uncomfortable feeling of having someone violate our security here at home. Without going into detail, we are all okay, only a few things are missing and we’re working on getting things secure again. And everything will be okay really. Mostly it’s just a hassle. There’s the funny things like the dogs made NOT A SOUND, or we were sleeping very deeply. And the yucky things, like, eewww, someone opened a window to our kitchen and came into our house. And back to funny again, like the dogs did NOT MAKE A SOUND!!!!!! We learned a new word. The police called the intruder a ‘tweeker’ - someone who does a lot of meth - gggrreeeaaaattttt.

And then the real gift. Always one to find the bright spot in as much as I can, I did feel thankful that this lovely ‘tweeker’ gave us our first July 4th holiday since 2007 that we didn’t focus on the cancer. So I will get my fill of using ‘tweeker’ and then I will go back to the old definition - someone who adjusts something just so and changes it just a bit. We tweaked our cancer story this time around and it came out a little differently. A welcome change.

Happy 4th of July!
love,
Maggie

The Rhythm of Life

Yesterday, another ovarian cancer friend passed away from this horrible disease. Her name is Sarah and here's a link to her blog. She has a mom, a husband, two children. She had all the same vague symptoms that many of us do and she shrugged them off, attributing them to something else, to the normal stress and pressures of being a woman in the world today. She faced her challenge with grace, determination and a wonderful sense of humor and her blog has been an important part of my own path as I learn to deal with this disease.

Ten days ago, another friend, Patty, left us also. Here was another warrior woman, determined to fight to the very end and do so with humor and grace. In late March, it was Jayne. Too many deaths, too many good women who are dying from this nasty, nasty disease.

The reason I am sharing this is because I would like to ask you to take some time visit their blogs and get to know them through their writings. That is how I got to know them and although we shared the cancer as a common thread, in the end, we are all still just simple women who are faced with an overwhelming challenge brought on by this disease. There are others out there, surviving and thriving and from them I take great hope and strength from. But what I want more than anything is to keep you aware of ovarian cancer and it's symptoms. I cannot stand the idea that another friend will be touched by cancer. So take the time, get in touch with your body and it's rhythms and if you suspect that something is wrong - it is the doctor's responsibility to prove to YOU that you are okay. It is NOT your responsibility to prove it to the doctor!

Here are the common warning signs of ovarian cancer:
- bloating
- pelvic or abdominal pain
- trouble eating or feeling full quickly
- urinary frequency or urgency

Additional warning signs include:
- upset stomach
- back pain
- pain during sex
- constipation
- menstrual changes
- unexplained changes in bowel habits
- unexplained weight gain or weight loss
- ongoing unsusal fatigue

When I look back, I had all or some of the symptoms for about 6-9 months before I was diagnosed. My primary care physician was sure I was dealing with IBS and I wanted it to be that, but I think I knew it was more serious. In the end, I am still alive because I have had excellent medical care and I have educated myself about ovarian cancer and the treatments available to me. And I have had the love and caring of literally hundreds of family members and friends that have carried me so lovingly in their arms. But I don't want any of you to have to reach this point. Let's all slow down and notice the little things and small moments of the day before life gets away from us.

Here's to Aunt Cathy, Sarah, Patty and Jayne and all the other lovely women out there who have had to make the decision to stop treatment in order to live out the last days of their lives in peace and dignity. Godspeed, my friends.

Quality or Quantity?

A quiet Saturday morning around here. R is out working in the yard, M is off on one of her tutoring jobs, C is at a friends house. I am taking a vitC treatment and just soaking up the peace and enjoying some fuzzy new hair on my head.

It’s been three weeks since my last chemo treatment. I can feel myself slowly gaining some energy and feeling a bit more upbeat than in recent months. The doxil will probably not show any positive results for two or three treatments and only then will we know if it’s going to help. I plan on using this time to get more focused on future alternatives, getting as many different opinions as I can. I must be able to make informed decisions as I continue down this path.

Yesterday, I received news of yet another ovca pal, someone I only know virtually and through her blog The Carcinista http://carcinista.com/ that has decided to tuck it in. She’s been struggling mightily in recent months and refusing more treatment is the next step in this rather awful process we chronic cancer patients are faced with. I highly recommend her blog. She has a wicked sense of humor and a truly lovely take on the cancer business. Her decision? Quality or quantity?

Although I want desperately to live, I have to also be aware and cognizant of what my own limits are. Someday, I will have to say “Uncle!” and only I can determine when that will be. I have a constant ‘conversation’ running through my head on this subject and have since my diagnosis. I also have regular discussions with Richie about how and when and why. These are usually accompanied by major crying jags and always when I am feeling compromised physically.

There is no satisfaction in this line of thinking, but there is a level of comfort for me. While I want M and C to know I am fighting hard to stay with them, they are living the disease as much as I am. And the realities of the disease are not pretty. We’ve enjoyed many wonderful moments in our lives together, but we have also had some extremely difficult times and a good mama takes care of her babies (no matter how old they get) as long as she can. And if there is one thing I can lay claim to - it is my ‘good mama’ status. So, I always make decisions with them in mind. How much more can I take? And how much more can my gang weather? This is not an easy path.

When The Carcinista made her decision to improve the quality of her life and be the mama her boys needed, I had a good long cry. I know in the end, no matter what happens to me, my babies will be okay. They are loved and can love, smart and beautiful, kind and funny. What more could a mother ask for? Time would be nice, but none of us have any control over that issue.

So for today I am thankful for the time I have had and for the chance to have this life. And I will hope for an even better tomorrow, one full of family and laughter and love. And I will know that I do have a life of quality, right here and now.

Happy Easter, thanks for all the meals, and for the love and good wishes.
Maggie

Spring!!

I am very thankful that Spring is almost here.  Technically, we have another couple of days of winter, but today it is supposed to be in the 70s and I am going to just sit in the sun for a bit to soak up that vitamin D and revel in the warmth.  The two most annoying side effects of the chemo right now are fatigue and the lack of hair on my body.  The fatigue requires a lot of naps and sitting around, which is getting more and more boring as time goes by.  The lack of hair means that I am cold all the time. Last night, Richie and I went to parent/teacher conferences for M at the high school.  The building was freezing inside.  And by the end of the evening I was shivering so badly I couldn't even walk to the car.  Mr. Wonderful had to go get the car, turn on the heated seats and drive around to the doors to get me.  Somewhere, somehow in this wonderful life, I did something right and was lucky enough to end up with a guy that I love and who is willing to do these kind of favors for me!!! How lucky I am!!!

We are getting ready to take a cancerless trip to the East Coast to visit colleges.  Four years ago, when this crazy nightmare started, I wasn't sure I would make it to this place, but we ARE there and going to explore Bryn Mawr and Smith College with M. C is going with us, too. He's not too happy about it, but I think once we are on the road, he will change his tune and embrace the fun that is traveling with Richie.  I am fun to travel with too, but a 14 year old boy is usually all about his dad and that's where C is right now.  We hope to have time to spend a day in NYC and see an old friend, and then we'll drop south to the Tennessee Valley to take a southerly route home.

I decided to take a break from this round of chemo so that I would have more energy for this trek.  And I do have more energy.  It has led me to explore some new ideas regarding the future and my treatment options.  I have been feeling lately that Dr. C doesn't have a plan for me. And I understand why. She says there is no literature or published studies that indicate how to move forward.  I take a sweet delight in that. I have survived for almost four years with a stage three cancer that statistically sees most patients die during the 18-24 month period.

I have defied the odds!! Take that, you cancery bitch!!! (that's for you, Kak!)

But I also am not seeing an end to treatment.  The chemo is holding me steady, but not causing the cancer to regress.  And I am tired from the constant chemical attack on my body, mind and spirit.

So, after a long discussion with Richie, I have decided to do two things.  First, I have made a call to the Mayo Clinic to initiate a review of my records with their staff.  I should be hearing back sometime in the next week or two.  I think it is time to have a new set of eyes and a new mind look at me, my treatment history and figure out if there is anything else that can be done to help me.  

The second decision I have made is to talk with Dr. C about not only switching to another, less devastating chemo regimen, but to also look at mixing up the schedule.  If I am to always be on some kind of chemotherapy, I want more control over how and when.  I want to have regular breaks so that I can have some more quality time with Richie and with the kids.  This short break has shown me that I need to have a chemo vacation every now and then if I am going to be able to deal with the effects on my body.  The risks are great because the cancer could start growing or metastisize at any time. But I also feel like the chemo is slowly killing me. So, will the chemo or the cancer get me first?  I know I have no control over that in the end, but I do have control over the now and today.  And I going to take that control now.

I will never give up the hope that I can "beat this bitch" and have a life free of cancer. But I also want to live now. I want to have the energy for trips like this one we are going to take, to work in the garden, to take a long walk or bicycle ride. I want to have the energy to enjoy where I am right now! And that has become harder and harder to do.  So, wish me luck, send those prayers, shoot me some positive energy if you will.  I think it's going to be a wonderful spring and summer.  And I hope to have some hair on my body by next fall and winter so that I don't have to spend every day hovering by the fire.  But that hasn't been a bad place to be, either.

Thanks for all the help and love, we feel it.

More Tests, More Chemo, Feeling Better

Yesterday, I finished my twelfth round of carbo and taxol. I already feel better than I did three weeks ago.  And that is good.  I still have hard days ahead of me, but I think the routine I have established - reiki, acupuncture and cranio-sacral work, will help over the next few days. Feeling naseous and exhausted, but I don’t think this round will be as bad as the last. Good news is a slightly lowered CA125 and some info form Caris Target. It lets me know we are on the right path, added femara and the vitD has been a good thing to be on.  Reminds me that I am on the right path and maybe all I need is a little more time and some patience. 

It’s been a long four years and quite an incredible adventure. Recently, I asked Dr. C for some addtional testing, specifically to find out whether or not I was BRCA positive. This is testing for the breast cancer gene. The results came back negative. The really wonderful result of this news is that means that my babies most likely do not carry the breast cancer gene and are very unlikely to develop the disease.  Breast and ovarian cancer can go hand in hand and this news alleviates a lot of worries, specifically for M, who has had a cloud of worry hanging over her head for the past couple of years.

Another test I requested was to have my most recent tumor tissue samples sent to Caris Life Sciences.  Caris recently has started testing specifically for ovarian cancer patients. They take the tumor and do specific biomarker analysis and then compare that information available in published medical articles and treatments.  The results showed that I have estrogen protein markers on the surface of my cancer cells.  So now I am taking a drug called femara which has been shown to help prevent cancer recurrence in estrogen positive breast cancer patients.  The Caris report also suggested that I would benefit from taking VitaminD3 with cal/mag.  I have been taking vitd and cal/mag since Jan09 when I started with Dr. Drisko at KU Integrative Med!  There has long been evidence that cancer patients are very deficient in vitD and after a simple blood test, she was able to determine that I needed to take this.  It was a good feeling to know that I have been doing something to help myself, something so simple really.  Dr. C said for all we know this has been something that has been helping me stay strong all along!!

Finally, the Caris report suggested chemotherapy drugs that would likely be beneficial to me, as well as a list of chemos that would likely not be helpful to me. The ‘good’ list included all the drugs that I have been taking.  And one or two that I haven’t had yet, it gives me options! Both Dr. C, Richie and I left that meeting feeling a bit heady. It was nice to have new information to go on.  Keep in mind, this information is based on a tumor that was two years old, but it is better than nothing.  And a good way to look at it is that I haven’t had enough tumor growth activity to ‘harvest’ any more tumor.  Things have been tough because I have had been on these constant rounds of chemo, but I also have had no disease progression, rather I have steady disease.  It doesn’t make the day to day fight any easier, but it makes my overall prognosis seem much easier.  As TJ said, possibly the one good thing about this cancer is that it is slow growing.  And that slow growth has given me more time with Richie, M and C and with my incredible family and all my wonderful friends.  

So, tonight is another choral concert, and my handsome C will be participating. I will take some anti-nausea meds (for the chemo, not the singing!!) and enjoy seeing my baby perform his music. He has been working so hard these past few weeks and I am so proud of him!  M is doing well, working hard at school and trying to juggle all the exciting information in her college search. And she turned 17 last week! I am still reeling from that one, my baby, seventeen! Richie is doing well, too. We are all excited about some warmer temps around here this week. If we can just get a bit of sun that will be icing on the cake and I will sit on the porch and soak up some more vitamin D!!

Thanks again for all the love and support.  I can’t imagine having made this journey alone, it’s been long and scary, but also full of love and support and I count myself as a lucky and blessed individual to have had all of you with me.

Maggie

Sunny Side of the Street...

Hi Everyone -

I have been trying to stay in a sunny frame of mind, trying to evoke dreamy spring days.  Things have been a little dark the last couple of weeks.  I haven't shared much of this with anyone because the news came slowly, agonizingly slowly.  

At the end of December, I was admitted to the hospital for chemo and my CA125 that day shot up to 508. The nurse was surprised and had it retested that night.  It dropped to 480.  I had had a UTI and that can affect it, but usually not such a big jump.  It had been 188 in November.  I was, as you can imagine, just devastated. Here we go again, I thought, the chemo stops working and we must prepare for another change. I spent the night in the hospital just tossing and turning, partly from the chemo and associated meds and partly from the horrible feeling that maybe I am losing the battle. Why can't one of these chemos work for me? 

Generally, I have been feeling so good. I had had such a good holiday season, felt reasonably well and kept thinking that I was functioning pretty well. The increased CA125 was just depressing. That was a horrible night. M and C drove into KC to pick me up the next morning.  I waited to tell them any news until we got home, no need to challenge my teenage driver with that kind of news while she is driving down a major highway. (I thought it was a pretty good decision as a mother!) I think some of the hardest times of this entire cancer journey have been the moments when I share cancer news with R and the kids.  Seeing the look on their faces when I have bad news is just heart wrenching. But I still think we've done the right thing in sharing all the news - good or bad - with them.  They deserve honesty no matter how hard it is for me.  

Dr. C ordered a ctscan for January 12 and I had an appt on January 20, so I decided that rather than share information piecemeal I would just wait until after I had seen her. And I really didn't have much news to share, I wasn't sure what was going on. And that was the worst part. For that last two and a half weeks I have been just chewing over the what-ifs, the maybes, the possibilities.  The good thing is that this mood spurred me to gather more information on new things going on in the cancer world.  I have been looking at new drug studies and trials trying to figure out what might happen next. Wonderful TJ has been helping me, reading over the trials and associated literature to explain what the drug companies or trial researchers are looking for. He has been a great resource not just in explaining the scientific details of the studies, but helping me to determine what my role in each would be and whether or not they would be a good direction for me. (Thanks, T.) At the same time, I was sending the same information to Dr. C. 

During all this, Mom arrived on January 1 for a visit. She was able to keep me pretty grounded, I don't know what I would do without her and lucky for me, I haven't had to find out. She helped me to see that things were not as bad as I was thinking and without any information from the doctor I needed to just take each day as it comes. 

This last week has been a little crazy. Early in the week, I felt like I was either getting a UTI or had low hemoglobin. A visit in for blood work revealed that what was really happening was that my stents needed to be changed, my creatinine levels were a little high.  So yesterday, I had my visit with Dr. C and then went on to KUMed to have my uretal stents replaced. It was a long, long day and everything went really well with that.  We'd had 6 or 7 inches of snow Wednesday and had to be at the cancer factory by 7:30am. R borrowed a friend's 4wheel drive (thanks Matt!!) and delighted in being able to drive in to KC in wintry weather conditions.  I was anxious about the doctor's visit, but not about getting there. I knew R would see it as a challenge and just find a way to enjoy it, he's such a great guy. So much to love about him!

We had a long visit with Dr. C.  The ctscan showed little change in the tumor on my bladder, but it also showed a lymph node that has doubled in size. And interestingly my CA125 is back down to 230.  We both agreed that we really just need to ignore the 480 from December.  I can do that, I'm Irish, if I just ignore it, it will go away!!

But we do have to look at the 230 and the lymph node. Strictly speaking, this is considered disease progression and calls for a change in chemotherapy. But in the meantime, there is still the vaccine trial to consider.  I will have another round of taxol and carbo next week.  I can't change therapies now, if I want to look at this trial.  And there are other things at work also. I am having some genetic profiling done. This will tell us a couple of things. I will be tested for the BRCA1/2 mutation, tested to see if I am HLA-A2 positive and my most recent slides (tumor tissue) are being submitted to a molecular profiling company. All of this information can be used to guide future treatment options.  

The upside is that I feel okay about everything.  I am still relatively healthy. The cancer has not metastasized beyond the pelvic area and that means a lot. That means I am doing pretty well. I feel pretty good. I could use more exercise, but I am maintaining a good weight and have a good appetite. Who wouldn't have a good appetite when we have meals delivered twice a week? I don't really have to do much but rest and take care of myself. I do a little housework, the laundry, make an occasional meal.  I am glad we don't have a big house, there's less to take care of! I am still knitting and doing a little sewing and still love to read as much as I can. I can't help but remind myself that I've got a really good life.  I have my good and bad days just like everyone else and there is something 'normal' and good about that.  

So, I am glad to be updating you without having to stop and cry. It's not the news I know you want to hear, but it's the news I have.  And I am glad you are all here to listen. Thanks for the lovingly prepared meals, the hugs and calls to check in on me. 

Just need to make it through the next 3-4 weeks. Chemo next Tuesday and Wednesday. Three to four weeks for all the test results which will help in determining the next treatment I will take.  She's leaning to the doxil again. That worked for about nine months for me last time and the side effects were very manageable. Not great, but livable. I will be sure to keep you updated when I know where we're headed. In the meantime, I will be staying warm by the stove.

Stay warm.

Love,

Maggie