Life News!

My CA125 is down to 5!  

This last year has really been a long, long journey for me.  I am tired, but very happy.  I am working hard at staying healthy, continuing my Vitamin C infusions, taking all my vitamins and supplements and watching my diet.  I eat what I can when I am feeling nauseous and then eating the right things when I feel good. The coming of Spring has brought warmer days and I am getting out for a daily walk.  This is helping me get physically stronger and then I can fight the cancer even better. 

I go in to the hospital next Monday, March 8, for my eighth course of chemo. I don't know how many more I will have. The way I see it, I can continue like this for a while. I am sure I will have two more courses of chemo (Monday's and then my ninth) and beyond that I don't want to know.  I need to live the life I have right now.  If I live too far in the future, I might lose sight of what is right in front of me.  I am not prepared to do that.  So I am happy to keep going the way I am.  

Richie, M and C are doing pretty well, too. Richie continues to be very, very busy with work.  It seems they are just on the cusp of big things. This should be an exciting, but crazy year for him. M is leaving for her trip to Chicaco with her high school orchestra.  They are performing and studying with the Northwestern Univ. Orchestra in early March. She is also a finalist for the NSLI-Y Study Abroad Program.  We should know by the end of March if she was chosen to participate. If she gets her first choice program, she'll be in Russia for the summer. She'll have intensive language studies and live with a Russian family.  I hope she gets her dream, but oh, I will miss her so!  C is getting ready to start track. He's running distance and loves it.  He's doing well in school and still loving his music.  He started trumpet lessons this past fall.  The trumpet added to drums and piano makes for a lively (and noisy) household. I keep telling myself that one day I will miss hearing all the noise.  That makes it easy to listen to.

We're off to the mountains for Spring Break.  Richie and the kids will get to go downhill skiing.  I will get to visit yarn shops in the area.  We finally decided to actually go on that spring break skiing trip we've been talking about.  We'll be in Dillon, CO. This is a good, central area for some good, cheap skiing.  

I hope you're all doing well. I hope Spring gets here soon.  I think I will have the strength to get out in the yard more this year and that is a good feeling. Richie did some early Spring cleaning on the porch this past weekend and I can't wait to put all the cushions and pillows out there, plop my body down on the couch and enjoy the breezes.  Thanks again to everyone for all your help and for the prayers and caring.  I could not have made it this far without your help, I am positive of that, so keep all the good intentions coming my way for a while longer, if you could....I still need the help!

I can hear the geese heading north, time to get out for a walk!

Love and Hugs,

Maggie

Good News!

I am at the VitC clinic for my second transfusion this week.  This has been a busy week; I am working hard at my job fighting this cancer.  This is week three of cycle six.  A week off.  Such a relief.  I am very tired, the chemo is really adding up in my system.  I had a rough go of it during course five. I was having lots of nausea and vomiting on day three. I haven’t had much in the way of vomiting since I started chemo two years ago. I know that is lucky, but this episode was scary and painful.  When the time came for the sixth course, I was terribly anxious about a repeat.  I did not have a similar bout of being physically ill and I am very thankful for that.

On Monday, I had a CTscan and then on Wednesday I had a physical exam.  The results for both are very positive. The CTscan didn’t show any cancer and she wasn’t able to feel any nodules or growth on the physical exam.  My CA125 was elevated a bit, from 11 to 17. My oncologist didn’t find that worrisome at all. So much good news to take in!

I will need to continue the chemotherapy regimen for the next three months.  I would rather stop, but remission seems close, it feels close and I would so much like for it to happen.  It seems I have come so far that to stop now would be idiocy.  The flip side is that it might not help me at all, but I just have to take the chance that I might benefit from more chemotherapy.

I remember hearing a story about a cancer patient whose omentum (in the abdomen, it holds all your stuff together!) had cancer on it that looked like mold, like spores.  If there is just one tiny cell, one single seed of that cancer still in me, it is worth it to try and zap it with the chemo.  If it comes back, it won’t be pretty.  I hate the chemo, but feel like it is what is keeping the cancer at bay.  I won’t know when to stop, hope the doc will know and in the meantime will continue to do whatever I can to stay alive.  It’s not only the cancer but also the treatment that keeps me in this viscous cycle.

I have not felt this optimistic in a long, long time, but I am tired.  Very tired. We are all a bit tired at our house, a mixture of the cold we are all experiencing and dealing with the stress of this mess. But we are planning a trip to the mountains for skiing over Spring Break.  I am looking forward to spending some time with just Rich, M and C.  As they get older, they naturally are looking more to their peers and we see a little less of them.  I try not to be too selfish about time with them, but I am selfish. I want to be with them as much as possible and it seems we have to take them away to get their full attention. I think a ski trip will be fun and no reason to keep putting it off till later, till someday.  We are going to live the life we have in front of us right now.

I hope Spring hits us early here in the central states! I could use a little more sunshine. And hope for the same for you all.

Maggie  

To Chemo or Not to Chemo

I have made it through my fifth course of carboplatin/gemzar relatively unscathed this time. The side effects are getting worse and I had a very yucky 48 hour or so period in which I was miserable.

Today is chemo course six, day one.  I was pretty anxious leading up to this course. Is this my last carbo/gemzar? I don't know.  I saw Dr. Chapman this morning at about 8am. The plan for now is to have a CTscan and a physical under anesthesia and then we will meet to determine the nest course of action.  I don’t know if this will all happen in the next week or next month, but for now I will just enjoy each day.  I have Day 8 to climb over next Tuesday and until I hear from my chemo nurse, I don’t know what else or when.

I would like to believe it is the last and that I can go on to something less invasive, but what do I know  (?), I am not the doc looking at study results, test results and the big cancer picture.  But I am the patient and I do end up having the shitty side effects and living in pain and uncertainty. And that's not a whole lot of fun.  But then the bad days pass and I feel good and I think, I could do this for a very long time. When the price becomes too steep, the side effects too persistent and if my quality of life becomes compromised, then I will look at these things in a different light.

  

We enjoyed a warm up in the weather and this has helped pick up my spirits.  The holidays were wonderful and I try to remind myself daily about how far I have come since last year.  Hell, I have come pretty far since July of 2007!  I am doing the best I can at trying to live one day at a time.  Time and hope really are good medicine.

One year ago, I was just out of the hospital and weak as a kitten.  And the recovery process this last year has been long and sometimes very, very hard.  But today I am good. I am stronger, healthier and happier. 

There is a website/blog I have been visiting recently called Being Cancer.  Here is the link. http://beingcancer.net/2010/01/14/ I really like it because it is written by a cancer patient for cancer patients and has links to lots of great information.  The post for 1-14-2010 is a wonderful essay about being hopeful and learning from cancer.  I urge you to read it! This site has also been linked to my blog, the administrator liked what I had to say, it was very flattering.

I send my good energy and hopes for you all to enjoy have a good winter. I am hoping for a little more snow, a couple of cold days which force me to stay inside, and then when the spring comes, I will jump into that season full of energy and both feet!

Hugs,

Maggie

Christmas Musings and Beyond

We had a delightful Christmas. I was overly prepared and gave too many gifts to the kids and Richie. Every year I think I will tone it down and find alternatives to the gifts, to the wrapping paper.  While I have been successful some years, this was not one of them. I did not have one medical issue the entire week and of course, that was absolutely wonderful. We even had snow falling on Christmas Eve. Pure bliss!

We had Richie’s side of the family over for soup and other fine foods on Christmas Eve. There were blizzard conditions all evening long, but we were all snug in our house, lovely music and conversation all evening.  M and C disappeared with some of their cousins late in the evening for movies, everyone else was gone by 10 p.m. or so. I was so very excited to have my first Christmas in two years as a ‘healthy’ woman that I stayed up late to play Santa and didn’t get into bed until one a.m.

M and C were up at the crack of dawn (it seemed) and we sat and enjoyed coffee and gift giving for a good few hours.  We ate way too much during the day; watched Richie and C run the snow blower, watched movies, read books.  I was so delighted to give my family the gift of ‘not being in the hospital’ for Christmas this year. 

Our celebrations ran all weekend long.  We haven’t had snow, at least this much snow (6-10 inches and lots of higher drifts) in a long, long time.  The kids went sledding on Saturday.  It was a little bittersweet as they didn’t need us to go with them. M remarked that we’d just tell them not to do the things that teenagers naturally want to do so it would be better if we didn’t go with them.  She was right, but it still made us a little sad.  But then we realized we would have the house to ourselves.  That’s good stuff, too! 

Sunday brought us out to the country for cross-country skiing and sauna.  I didn’t do either, but I had the company of lots of family and a few friends and it was a great way to end the holiday weekend.

Yesterday I was admitted to the hospital for my chemo. Course 5, Day 1.  I had a reaction to the carboplatin during my last infusion and am now relegated to the hospital for any future carbo infusions.  They will infuse my chemo drugs very, very slowly over a very long period. I should be home before the end of the day today.

I am starting to have some more serious side effects with the gemzar and if I continue to take the drug on Day 8, I will not have any ‘time off’ the chemo during my cycle.  This just means that I will feel awful during each week and not really have a break or chance to feel good before the next cycle begins.  UGH!

I saw my doc this morning. She was able to answer my questions regarding my gemzar side effects.  I will continue with the protocol but learn how to work with the side effets in a different way.  My CA125 was down to 10 when last tested. So, the chemo is working for me.  The question is for how long and at what price. 

All my love and thanks to everyone for helping us to get to the holiday without any problems. I cannot express in simple words the joy of being at home, with Richie and our children, for Christmas this year. It was for me the greatest gift to give and to receive.

Please send your good juju and prayers my way.  I really need it during the next month or so.

Love and hugs!

Maggie

Happy Holidays!

I have never been much for the holidays.  I like holidays, I like that we have them, but it has never been important for me to get crazy about decorations, celebrations, setting the mood.

I am not exactly a Scrooge during the holidays, but long ago I decided that I did not like the commercialization of Christmas and wasn’t willing to participate at that level. We have always had fun with the kids, but we never let ourselves go overboard with presents and decorations.  The past two Christmas holidays I have been incapacitated to some extent, either recovering from major surgery or preparing for it.  This year, I am relatively healthy.  This year, I am going to participate more fully in celebrating Christmas.

We have our Christmas lights up and glowing.  Christmas decorations have been moved from the basement to the first floor, the boxes are ready to be unpacked.  We are making plans to be with our family. I am almost finished shopping for gifts. I am planning our Christmas day menu.  We are hoping for an uneventful, calm, happy day.  

We are getting our Christmas tree next weekend and we’ll go together, the four of us, just like we always do.  There will be nothing bittersweet or sad about this holiday. I will not get sick. I will not be admitted to the hospital. I will not allow it to happen.

I got myself out for a good walk yesterday.  It was spitting a bit of icy rain, but the temperature was just right at 30 degrees.  Twenty years ago when Richie and I first met, we spent all our free time exploring the winter wonderland we lived in.  I pulled those memories out today and held on to them while I walked downtown.  I am pleasantly tired from my exercise and reminded that I need to get out everyday for that fresh air.

I am in the city today for VitC and chemo.  I anticipate increased fatigue from the gemzar, but hopefully not much more.  I have two weeks off before the next chemo and hopes for an even lower CA125 next week. 

Thanks to all for the good words, good cheer and help with all things related to our daily dealings with all things cancer.  Happy holidays, good cheer! And love, lots and lots of love.

Maggie

 

Course 3, Day 1, Day 2, Day 3…….

I completed course three, day one of my chemo schedule.  I wish I could say, it was a breeze, but it wasn’t.  It was a long day, lots of waiting.  I waited for my appointment with Dr. C for two hours, which made me two hours late for chemo, which made the day two hours longer than I had hoped for.  I am glad Dr. C takes her time with all her patients.  She takes her time with me, I never feel rushed, and we had a good visit.

She used the term roller coaster today.  My CA125 is down to 12 as of Friday, November 6.  I have not been excited about sharing this because first of all, I am really fatigued.  And second of all, the roller coaster ride is equally tiring.  I am glad for it, really glad.  It means I get more time.  Time for living and time for being with all the people I love. 

I will have a CTscan after my next chemo to see what those silly, misguided cells are doing.  My physical exam today revealed that the one nodule she can feel is not so prominent any more.  YIPPEE!  That has all kinds of implications.  The chemo I am on is shrinking the tumors, I will have less physical side effects from the tumors and it could bring some kind of remission.  The less exciting news is that I have side effects from the chemo that are just as bad as side effects from the tumors. At some point, the tumors will become resistant to chemo and start growing again.  Then I will start a new regime, if I feel I can handle it, and the ride will start all over again.

At this visit, I asked Dr. C for neupogen, to boost my white count to help ensure that I would not have to miss any chemos. Missing chemo treatments, while a break from the misery, always makes me anxious.  Will I become resistant to the drugs if they aren’t delivered in the prescribed fashion?  I think that ‘they’ don’t really know.  It is such a grey area. 

I had my first nupogen shot (day 1 of 4) on Friday afternoon.  I didn’t feel too badly afterward, managed to keep busy and had a nice visit with Rich at the end of the day.  After my shot on ‘day 2’, I quickly started to go downhill. First, we thought it was the effects of the shot, flu-like, achy muscle symptoms, and I spent most of the day in bed.  Sunday morning it was determined I was dehydrated, but in my own stubborn way I refused to stay at the clinic and went home with the promise to drink, drink, drink.

By Sunday evening, I was at the emergency room, 103.5 temp and very shaky.

I was admitted to the hospital and after three days they sent me home.  I had not had a fever in over 24 hours and although they cannot figure out exactly what was causing my fever, I am confident I will only get better at home.  I will not take day 8 chemo (gemzar) because I am tired of feeling crappy and I so badly want to feel good next week. 

We are headed to St. Louis for Thanksgiving with my family, it will be the first time we have all been together since my dad died and I am very excited to see all my siblings, nieces and nephews. And my mom, I love seeing my mom.

I want to do as much as I can while visiting.  There’s the Cranberry Bowl and our annual trek to the movies (about the only day of the year I go to movies) and I get to spend five days with Richie and M and C. I would rather spend time with those three than anything in the entire world.  The big plus is M will drive this year and what a great break that will be., M and C listen to good music and we start the trip listening to Alice’s Restaurant.  We’ve been doing that for as long as I can remember.

So, things are looking brighter.  Don’t they always after the dawn? I am in better shape this year than I was last year and I am alive, always something to be thankful for….

The Roller Coaster is Leaving the Station

I visited the oncologist on Monday, September 28. I had a VitC treatment that morning and had had blood drawn, the usual routine. I knew before my visit that things were changing. I knew from the CA125 and I knew from my body. My CA125 jumped from 154 up to 1091 in just a few short weeks. I cannot put into words how devastating this was. I knew it would be elevated because of the surgery and irritation in my pelvic area, but a 600% increase was indicative of more than just irritation from surgery. I had a physical exam with the oncologist and this confirmed her suspicions that the tumor is growing again.

I started a new chemo regime on Tuesday, September 29. Two weeks on, one week off. My new drugs are carboplatin and gemzar. I had carbo during the fall of 2007. It is a first line drug for ovarian cancer and it makes me feel yucky. Nausea, flu like symptoms and fatigue are my new side effects. Week one I have both drugs and then week two I get just gemzar. Gemzar is another chemo used for ovarian cancer, and like any chemo it's nasty stuff.

For the first time since I have been seeing Dr. C she used words like 'aggressive' and 'quality of life.' Those words can just stand by themselves for a moment while I breathe.

Richie and I and M and C were just devastated by this news. Up until this point, I have believed I can reach remission. And I still believe that, but I will have to work harder to reach that and I am tired. I have been working hard for two years. I still have hope, but now I am faced with making decisions and having discussions with my family that I hoped to never have. As is my nature, I am working on finding the positive side of this, on finding the angle that will allow me the most peace. And here is it….

I never wanted anything more than to be a wife and mother. I had no grand dreams of a career outside the home. I knew that marriage and family were in my future. I was lucky enough to meet my soul mate, the love of my life and to have two beautiful children with him. I have lived a very happy and fulfilling life for the past twenty years. I have my dream, I am living my dream. How lucky am I? I think I am very lucky. I think I am very blessed. I have a very, very good life.

I am not giving up. I will continue to fight hard because I really want nothing more than to raise my children and grow old with Richie. But I would be a fool to not face the reality of the situation. It would be unfair of me to not prepare for my death – be it in two years or twenty. I owe it to Richie, M and C to leave nothing to question. How cruel would it be for them to ever wonder if they had done enough? I must help them find the peace to survive me. In order to do that, I have to find my own peace.

So now, while still fighting for my life, I must prepare for my death. I have a lot of decisions to make and questions to answer.

Nothing in life prepares you for death. Nothing. We live our lives being alive and thinking and doing, death is something that is always far off in the future. So I will live the life I have right in front of me. When I feel poorly, I will rest and relax and let the drugs do their job. When I am feeling well, I will run the errands, fix meals, do the laundry and be happy that I have the energy to do the things I can. I don’t want to miss the orchestra performances, the band concerts, ballet or Tae Kwon Do. This is a good life that I have and I am very thankful. I am thankful for my family and friends and for all you have done to help us through this very difficult time.

I have been feeling good this past week – it is my week off chemo. I have been busy doing things while I feel good. This past week we had parent/teacher conferences – C is doing well, a little bit of the class clown, but obviously intelligent and capable of good things - and college night at the high school. M is looking at a wide variety of schools and in her usual way is starting early, getting prepared and taking in information.

On Friday I had a VitC treatment. I had blood drawn that day, part of the monitoring that the oncologist’s office does, and we had such good news! My CA125, which was almost 1100 on September 28 has gone down to 78, after just one round of the new chemo! What a roller coaster! What a full life! And how lucky I am to be living it!