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

New Year Greetings

I have been reluctant to update you all because things seem to be in limbo right now.  And because, as you can imagine, I tire of the cancer story.  I fear my story has become so focused on cancer and yet, there is so much more going on and so that is what I will focus on for now. 

Richie is very busy at work.  That’s what happens when you work in publishing. There are constant deadlines and the need to always have something ‘in the can’ to go to when things blow up.  He is still editing multiple titles, but his favorite and the one that takes most of his time is Motorcycle Classics.  Some days I think he is still surprised that this ‘master’s thesis’ became a real magazine and he gets paid to write and research about his passion.  The job comes with all the wonderful perks you might imagine....40+ hours a week, stress, managing employees, and meetings, meetings, meetings.  But seriously, it really does have some great perks.  And it’s a job, right? We are lucky he has one and we have health insurance.

Miss M is a fireball. She seems to be kicking and screaming her way to a future. She’s never stopped trying for something, anything, always searching and asking and doing and being.  College is just around the corner. I know it will happen too quickly for all of us. I hope to get her there with little craziness from the cancer and lots of love and support.  She’s got a whole family and community to help her, just like they’ve helped us up to now. We’ll go East this Spring to have a go at her college choices. I feel oddly proud that she is leaning towards all female colleges like Smith and Brown.  I only hope that she looks as good on paper as she is in real life, that they see what an exceptional young lady she is and give her lots and lots of free money to attend their school.

My C.  My baby. He has more faith than anyone that I will survive and thrive, I think. He, who believes he has little faith in the spiritual side of life, has more faith than all of us put together.  He really has taken such leaps and bounds in the past two years in growing up.  He’d done a lot of growing up before that, but it seems that recently things have jelled even more for him.  I AM so proud of him. He has a few activities that he is becoming really passionate about. His heros are good people, men we know, that we’re proud and lucky to have him model.  I do know he’s going to be alright.  School is not necessarily his passion, but he’s smart and he’s learning. Biking is where he’s focused though.  Tae Kwon Do is his exercise and drums definitely help with keeping him focused and creative. I do worry. Who wouldn’t worry about him wanting to be a cyclocross racer? I encourage him to follow his dream, because we did. Richie’s magazine was a dream. This family was my dream. Maddie dreams of a sophisticated and exciting education that will take her on worldly adventures. And C dreams of cyclocross. But I don’t want him to throw himself down mountains on a bicycle!!!  It would be so unlike me to discourage him. I just want for my C to be happy.

I am so glad to still be alive, to still be with Richie and the kids. I must stay positive and find the strength to keep going for awhile. As C has said, I can’t give up yet. I have to keep trying. 

Love and hugs,

Maggie

Merry Christmas!

My best wishes to all for a very Merry Christmas.  We will spend Christmas with Richie's family. The usual holiday preparations have been made and we are relaxing with cozy days in front of the wood stove and watching all different kinds of movies.  Today's selection was The Quiet Man. Such a great movie!

I am quietly knitting the last of my gifts and enjoying the company of my darlings during the day.  They disappear, as the evening approaches, to visit with their friends.  Poor Richie sees little of them during the holidays.  As is the rhythm of their lives right now, they sleep late and stay up late.  But it is wonderful to see them doing normal things, having normal lives and pursuing normal activities. If they were staying home all the time, I would be a little worried.  This behavior makes me feel good about how things have been going lately. Despite the cancer we seem to be managing well.

I am feeling good physically. These last six weeks with only one chemo (instead of two) have been a little easier on my body. Even though I had also caught a cold last round, I seemed to weather all the side effects (chemo and common cold) pretty well. And this extra week at Christmas is the best gift I could have been given.  It feels quite nice and natural to have 'normal' days.

The latest cancer news is that there isn't much to report - much to my pleasure.  I am holding steady. The cancer is not advancing, nor is it retreating.  And I can live with that. I am very tired, but I have the energy for the little things. I can usually get a couple of small errands run, the grocery, the bank, and my favorite place - the library.  If I rest for an hour or so during the afternoon, I am good for the evening. The evening is the best part of my day. I love when the kids and Richie are home. Yes, it's the best part of the day.

I had chemo right after Thanksgiving and will go back in again for a round on Dec. 29. As long as the tumor doesn't change much and my blood work stays the same, I will continue on the carbo and taxol.  This next round will be my eighth of this series and I am weary of it, but if it is working for me I must continue it.  The trade-off is that I feel good when I feel good. The days of nausea are no picnic, but they are worth going through to have the good days.

More good days mean more time with my gang.  Each day with them helps me so much. They are my best medicine.  My thanks to all of you for your continued prayers, the meals and for the loving. We recognize how blessed and lucky we are this holiday season, we recognize it every day.  We wouldn't be in such a lovely spot if it hadn't been for the generosity of our family and friends. Pat yourself on the backs, my dears and I'll see you in the New Year!

Hugs,
Maggie

Weathering the Storm

I've managed to weather another round.  Much to my surprise.  I went into this one thinking depressing thoughts.  I mean, how much more of this can my body take? Well, I am gambling on more because my intention is to continue on the same path.

I think I finally have the hang of it after seven rounds.  If I get a little something in my stomach just before they load me up with steroids and benadryl, I fidget for the following couple of hours and then exhaustion takes over. If I am coherent enough to ask for more benadryl during the evening I will sleep through the night.

The rub is I am never coherent enough to ask for the benadryl again and the night drags on.  The constant assessments and readings and changes in drug delivery make for a long, long night. I always plan for it to be different, but need to be more explicit with my needs BEFORE I take even the first of the pre-meds.

Mostly I am just trying to document the process, but also I am trying to remind myself of what I need to do. I have it written down and I have it in my head but I often forget, hoping that each round will be better than the last.

On the other side of chemo I have the usual nausea, aches, pains and fatigue and this time I had the unfortunate luck to also get a good, old cold.  C, M and I all suffered through the long weekend. I have to say that it was nice having their company for the weekend, but it is always hard watching your children suffer. I would gladly take on their woes, but I know I would not be doing them any favors.  So, C stayed home from school on Friday, coughed and sneezed the day away - and away from me.  I couldn't take the chance on getting more of his germs! Saturday was my day to just suffer alone. I played on-line mahjong and read the end of a good book.  And I napped - often.  Sunday was M's day to sit with me. She studied, we watched a good movie - The Painted Veil - and she napped.

So I have survived another round of carbo/taxol.  I hope that I am close to the end of this stuff. I hate this cancer. I hate the chemotherapy, but I do love being alive. When the bad days end, I can be happy with what I have.  And what I have is another day, another sunrise, another smile from my guys.  I think I can weather that storm....

Focus on the positive, focus, focus on the good

Tuesday morning, 8am.  I am going back in to the factory this afternoon for another round of chemo. On the one hand, I feel amazingly relaxed about what I know is coming. I have made all my follow-up appointments: acupuncture, nuelasta, reiki, massage therapy.  The pantry is filled with the foods I know will physically satisfy my hunger.  Rides have been arranged and I have had my pre-chemo conversations with the nurse. 

On the other hand, I am almost shaking with the anxiety that these ‘sessions’ bring.  M, C and Rich have all jumped on the anxiety train and we all feel a sense of desperation that none of us will ever get comfortable with.  There are always the niggling worries about how we will weather the chemo this time around.  Will this be the time that my body has a major reaction? Will another physical side effect intensify? Will the chemo finally make me sicker than the cancer? 

Rather than have a time and date when this will all be over, I’ve preferred to just know what will be happening the ‘next’ time.  I don’t want to be disappointed if we have to go into extra innings with the treatment and so I don’t want to know if seven or eight or nine treatments will be the limit.  And I realized last night that I don’t want to know because I don’t know what will happen next.  I have already run through most of the drugs that are likely to have helped me - and they haven’t. So what next? Well, next might be a drug that could help me but that has some really nasty potential side effects.  Those side effects make losing my hair seem like easy street.  I cannot even list them for fear of making them real and I am not even on the drug yet!!!

But more importantly, I head into this next round with a storehouse of lovely holiday memories. We spent Thanksgiving in St. Louis with my family and it was a wonderful holiday. I really do think family and friends are the best medicine I have right now. We had a delicious dinner on Thursday at Mom’s house. The whole gang was there (minus my nephew and his girlfriend - you were missed!!) so it was a lively and loud full house.  Friday started with brunch and then everyone went different directions. I found time for a much needed nap and that evening we had a great dinner at a local pizza place (a niece's current job.) Saturday, Rich and I took the kids around town to see some sights.  I had a late lunch with some friends and they did some more exploring.

As always, the best part of the trip was the ride home, it’s always great to have the kids all to ourselves for those four hours and is my favorite part of the trip. So rather than focus on the bad, I will keep pulling on my memories of Thanksgiving 2010. Thanks to my family for all the laughs, the good food and wine, and the chance to all be together again, even if just for a few days.

Love, lots of love,

Maggie