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!

Good things are happening in cancerville. I had surgery on September 2 to correct the problems I have had with my bladder since the January surgery. Recovery has been going well and, although I have been experiencing both the highs and lows that come with surgeries and physical setbacks, lately I have been feeling good.

Last Friday, I went to have a test called a cystogram. This test was to determine if my bladder had any holes in it. During the test I had a little leakage, but nothing compared to how bad it was with the bladder fistula. I saw the urologist in the afternoon and he removed the catheter. I was crying. The doc and his nurse were crying. He said I deserved some good news and I couldn’t agree more! It has been a long, long time since I have had control of my bladder. This catheter has only been in place for two weeks, but the removal of it ended nine months of problems I had been experiencing since my surgery in January.

This is such a huge relief and a lifting of the doom I had been feeling regarding my health and my ability to recover. I have had chemo in my system for well over a year and chemo makes me a slow healer. To me, the catheter was an outward sign of my cancer and I had been feeling a great weight with it’s presence. And now it is gone!!!!!

I believe the healing from the recent surgery also speaks highly of the overall condition of my immune system. I had been warned that I might have the catheter in place for three or four weeks. Healing in the two week time period gives me great hope that my immune system is doing it’s job and doing it well.

I see the oncologist on the 28^th of this month and at that time we will determine the next course of action. I will likely have a high CA125 because of the surgery and no chemo for the last eight weeks. I am hoping she will put me back on the doxil, I feel like I was responding well to that. She is also likely to put me on avastin. The doxil/avastin combination seems to be working well for other ovarian cancer patients and I sure would like to be in their club.

So I will enjoy my last seven chemo-free days and put my energy in to the garden. It is time to trim back the bushes, divide the bulbs and spread the mulch. Thanks to everyone for all your good wishes.

Love and lots of hugs,

Maggie

A Crazy Week

This past week was one of those crazy weeks when life is busy and crazy and frantic. The kind of week that can't end soon enough.

Tuesday was a tremendously long day at the hospital. Wonderful Brenda picked me up at 5:30 a.m. for an early test, followed by another test, followed by waiting, followed by waiting, followed by another procedure. We arrived home at 6:30 in the evening. Exhausting!

Thursday morning, I was on the phone with my sister Kaki, on my way to KUMed. I was driving our 'new' car - '02 Passat wagon - and I decided to get off the phone as I was hitting the rush hour traffic and needed to pay attention. And good thing I did.

Right after I got off the phone with her, it felt like something hit the underside of the car and it started smoking. Luckily, there were very few cars around and I got off the highway and onto the shoulder immediately. I got out and looked underneath only to see oil pouring out of the engine and a big chunk of metal (a piece of the engine) sitting underneath the car. I looked back and you could see the path I took leaving the highway by the trail of oil I left.

We have only had this car for nine days and we haven't even registered it!!!! I called Richie immediately. Thankfully he had not made it all the way to Topeka yet and he reached me about 45 minutes later. He got me into KUMed and then turned around to meet the tow truck. Then he came back to pick me up.

We called the guy we bought the car from (without a warranty) and asked if he would be willing to come to terms with us. Neither one of us expected that he would - we knew we were buying a used car with no real history - it's the risk you take. Richie knows his stuff and this seemed like a great car. Much to our surprise he called back and offered to buy it back for 75% of what we paid for it. We decided this was the best route to go. Life is stressful enough and we don't need things to be any more complicated than they already are!

On Thursday we had good news, too. The results of the PTscan from Tuesday were clear. No cancer, nothing lit up, nothing new! I had had a CT scan on the 20th of July that showed a spot in my pelvis on the right side and my oncologist wanted to know what it was. So the tests on Tuesday included a PTscan, another CTscan and a pelvic under anesthsia. The results from the CT and pelvic on Tuesday are not in yet. and I haven't spoken with the oncologist so I do not have other details or test results yet.

Needless to say, we are very excited about these results. I was sure the cancer was back, even though I feel good, I hesitate to get too excited because this cancer has been so aggressive. I met with the Vit C doc today and she seems to think I am doing really well - and I am. But I am fatigued from the chemo and having some increased side effects in the way of skin rashes, but nothing more than that.

I also met with the urologist today and we set up a date for him to fix the vaginal/bladder fistula. The surgery is set for Sept 2. My mom is going to come up and stay for a week or so, or for however long she wants to. I will have to stay in the hospital overnight barring any complications that is. The urologist is confident that I will make it through this without any trouble, but there are always risks.

Richie has a business trip set for that weekend and I really want for him to go. His business trips are sometimes like vacations and this one definitely qualifies. He will be in Utah at the Bonneville salt flats for motorcycle racing. He has been invited to stay at the track, camp out with all the racers and their teams. We have family and friends around to help, but mom and I will probably just sit on the porch all weekend.

So, forgive my rambling, but I have had quite a week. I am exhausted from all the ups and downs. But my spirits rise when I realize that six months ago, I was feeling poorly and not very positive about the future. I am so much stronger now, both physically and mentally.

M and C go back to school next week. M starts at the high school and C in 8th grade. Time has gone too fast, it seems like they just started grade school a few years ago. Such a bittersweet time for parents.

Love to all and many thanks for all the good wishes,

Maggie