Good Life News

We are busy busy busy LIVING right now. It seems that there is something to do every day after school and every night another errand to run. I love and hate this time of year. Spring is wonderful and the weather has been fantastic, but it seems school is busy cramming everything into the last three weeks. Madeline is playing soccer, two games a week. Charlie just finished up track season and there are band and orchestra concerts to attend. What am I complaining about?!? At least I am alive to do these things! Silly me. I will stop with the complaining. LIFE IS WONDERFUL!!!

I have had a three week break from chemo and have enjoyed the time off immensely. After my last round of chemo, it was time to reevaluate my treatment. Dr. C ran the usual blood work and I had a CTscan. The CTscan was negative, showing no cancer. What a relief it is when those results are given. I feel good, I look good, but will the test reflect that? They sure did this time! My CA125 (which was taken this last Monday) was 40. That was disappointing – up from 16 and totally going in the wrong direction. I let myself feel down about it, but Richie reminded me about how good I feel, how good I am looking and how well things have been for me physically. So I let myself feel sad for awhile. I think I am over it now….

The CTscan also showed that I have something called “hydronephrosis of the kidneys.” This is a swelling in the ureters, something usually associated with kidney stones. Dr. Chapman thought I would need to have stents inserted in my ureters and her staff was working to find time for the urologist to do this and for Dr. Chapman to do an pelvic exam under anesthesia. This is mostly why I got a three week break from chemo, the scheduling was difficult, but Dr. Chapman didn’t seem to be worried about me not being on chemo for that period of time.

Long story made even longer – the urologist was sure I did not need stents. He feels that this will be a chronic problem, a result of the re-implantation of the ureters into the kidneys from the January 2009 surgery. I seem to have a ‘back flow’ problem. I have an appointment with him tomorrow morning to discuss the results of a recent renal lasik test. This was done last week and is a nuclear medicine exam to test the function of the urinary tract. I hope to have a clear answer tomorrow regarding the ureters and what I can expect in that regard for the future.

The most important news though I have saved for last. Today I had my exam with Dr. C and she DID NOT find any cancer!! She spoke with Richie after the exam and she said we are on the high side of the roller coaster. I prefer the peaks to the valleys. She is a wonderful doctor and a pragmatist. She won’t give us estimations and guesses. She gives us hope though to help us through the good and bad and I am glad to be in her care. And her approach works for me...it helps me to appreciate each day and live it to the fullest. I will always have the ovarian cancer to contend with. It will always be a part of my life. How I let the cancer define my life will be up to me.

The most important thing I take away from today is that the good physical health that I am feeling is reflected in my blood work, scans and physical exams. The better I feel, the more I can do and the stronger I feel. Naturopathic and homeopathic medicine stresses the importance of keeping oxygen levels high by exercising and eating well. I am doing all of those things and in celebration of that I bought a new bike today. It’s blue and I love it. I rode it home from the bike shop and then Richie and I went on a short bike ride. I have been walking every day, but I love bike riding and I haven’t been out on my own in two years. It felt so good and I had a big smile on my face!

I hope you are all doing well. Thanks for the prayers and good energy. I feel it, I am living it and I wish I could hug each and every one of you right now to show you just how well your prayers have been working.

Love,
Maggie

On a precipice...

I feel as though I am standing on a precipice. It could be the steroids coursing through my body.  It could be the chemo I received Monday and Tuesday.  It could be the general anxiety I feel during week one of chemo.  I had my ninth infusion of carboplatin and gemzar on Monday.  It was a strange stay in the hospital.  I was more anxious than usual going in, hadn’t slept well in the days before, and generally felt strange.

I have been thinking a lot about continuing the chemo. I wonder how much longer this one will work for me, how much longer can I go with it before it stops working or becomes too toxic for my body.  And I have been thinking about how wonderful it will be to stop chemo.  It would be wonderful, after almost three years of continuous chemotherapy, to just stop.  And that’s when I get panicky.  My experience has been that when I stop chemo (for a surgical procedure or something), the cancer returns with a vengeance. 

And then those thoughts bring me full circle.  What if the cancer is gone this time? What if I have managed to find remission?  Wouldn’t that be wonderful?  The truth is that I really feel quite peaceful in the midst of all the uncertainty. For the last sixth months I have been living in the present, more so that at any other time in my illness.  Since Dr. C gave us the talk late last September, I have resigned myself to the idea that this is a chronic disease. I accept now that today is the best day. Today I am content.

We had a lovely holiday season, no worries or sickness hanging over our heads.  We managed, along with every one else, to live through this long, long winter.  Even on the cloudy days we found things to be happy about. We went to the mountains over Spring Break, giving ourselves that long dreamed of trip. That trip we kept putting off until later. It was incredible.  We had five full days. We got to have M and C all to ourselves.  They were such great company.  I really enjoyed spending so much time with them and having an adventure that didn’t revolve around the cancer.

Now spring is here and we are finding our way outside. Richie and his brothers built a new workshop in the back shed over the winter.  He has dedicated workspace for his motorcycles now and is very happy.  The kids helped me rake up all the leaves we didn’t clean up last fall. They didn’t complain once! We really enjoyed ourselves. 

And here I am on the precipice.  Things have really been going our way and maybe I am on the cusp of something good.  Thanks for all the good wishes, for the hugs and good cheer when we see all of you! I love the words of encouragement and really do take the words to my heart.  I know I am looking stronger and when you all recognize it, it gives me strength. So thank you, thank you all for taking such good care of us these past few years.  The prayers and positive energy have really been working, so please don’t stop!

Love and hugs,

Maggie

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