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

Time for an Update

Today I am in KC for Vitamin C and chemo. This morning, as I sit in the ‘lounge chair’ with my ‘good medicine’ dripping in, I am anxious about the ‘other medicine’ this afternoon. This will be my sixth doxil treatment.

We met with Dr. Chapman on Monday. My CA125 rose again from 110 to 134. This is a much smaller increase than the last time, but an increase nonetheless and this causes great anxiety for me. I also had a CTscan on Monday, July 20th that had mixed results. The scan showed my chest and abdomen are clear which is great because it shows the cancer has not metastasized but there is a small (2cm) spot in my pelvis. This could be new cancer growth, an inflamed lymph node or scar tissue from my surgeries. The plan is to continue with the doxil and monitor the spot in the pelvis. I will have a PT scan sometime in the next few weeks (I hope!), which should give us more information.

I have also been dealing with another fistula, this time involving my bladder. I am working now with the docs to schedule an outpatient procedure to have this repaired. It can’t happen soon enough for me!

Generally, I feel really good. I am in pretty good spirits and my physical strength and stamina get better every day. I was so busy yesterday – and it felt so good – that it reminded me of the ‘good old days’. Mornings are my best time. I wake up early with Rich and then get as much done as I can until my energy starts to dip.

The side effects of the chemo are getting a bit worse. Doxil likes warm and moist areas of the body in addition to causing problems with the hands and feet. I am having problems with my feet particularly when it is hot. I do feel like this mild summer has been a gift. If the weather was more normal this summer, I would likely be more miserable. Right now, when the temperature and humidity rises, I feel tingling and tightness in my legs and feet. The rash gets worse the hotter it is and I tend to have swelling in the lower legs and feet at the end of the day. The rash is not itchy, just persistent and takes days to resolve. I feel a little nauseous during the second week after chemo infusion. Not so bad, I guess. Things could always be worse.

We are having a good summer. We are renovating the bathroom on the main floor. This has been a good thing for me physically because I have use the basement bathroom and the stairs have helped me build up my muscles! This project should be done by the end of August and it will be exciting to have a new bathroom! I am not a good decorator but I know what I like. I like things to be simple and there is nothing simple about renovation.

M and C have had a busy summer. They are always off with friends and gone from the house. They went to the Adirondacks for a week in mid July and came home different people. They spent the week with a large group of cousins, swam, kayaked, hiked and generally relaxed, all without the parents. It was heavenly. Rich and I missed them terribly, but managed to survive!

I head to St. Louis for the weekend to spend some time with my family and see an old friend, someone who was very helpful to us in NY two years ago. Then we are off to the Twin Cities for a quick visit before school starts. For us, it is almost an end to the summer and I can’t believe it has gone so quickly. I can look back and see what incredible progress I have made in getting stronger since January. I still have a ways to go. I can’t wait to be cancer free, in remission and working on rebuilding my life. I want to get back to school and working again. I am a more patient person now than I was a year ago, but I still can’t wait for some ‘normalcy’ again.

My heartfelt thanks to everyone for the help we’ve received. We are so thankful for the good wishes, the help, the positive energy and the prayers. And as always we send ours to you.

Maggie

Two Years

Tomorrow is the second anniversary of my diagnosis. Two Years!!! Sometimes I just cannot believe this is my life.

We had a pretty crazy June, but the weather has been very nice and I have been spending a lot of time sitting on the porch. I really like the porch. I have been working hard on trying to get the insurance company to support my Vitamin C therapy. Lots of paperwork, phone calls, negotiating, begging, crying - and the porch has become my office area. Depending on where I sit I can watch the neighborhood (true Alice Kravits style) or I can hide and avoid detection - just depends on my mood.

Two weeks ago I came down with another infection and after a visit with the doctor last Thursday to remove my stents, I have been feeling really, really good. The low grade infection that kept recurring was really dragging me down. And then this past Monday, I had a visit with the oncologist and then my fifth chemo treatment of doxil. My CA125 is up to 110, doubled since last month.

I hate the CA125. I hate the anticipation of the test, the anxiety, the fear, but it is the standard used by the oncologist to determine if there is possible cancer activity going on in my abdomen. BUT...the CA125 can also be influenced by irritation in the abdomen unrelated to the cancer, like infection. So, my hope is that the increased number is indicative of the urinary tract infection and not new cancer growth. It is either one or the other. So, in two weeks time, we will repeat the CA125 and then I will have a CTscan. The roller coaster is warming up and will be leaving the station soon.

So, the Fourth of July holiday is not a very exciting time for me. It certainly is a memorable time, but I think I will spend the day following my family's lead. The kids will surely want to set off something explosive and I know the dogs will be a little skittish and I feel a little Alice Kravits time coming on.....

Relay for Life and life.....

The Relay for Life evening was absolutely wonderful. Our “Tutu Bad for Cancer” team drew lots of attention, we looked BAD!!! One member of the group talked his way into bringing his little ‘canned ham’ trailer on site for us to use on our campsite. As it was the only trailer on site, it was easy to spot our meeting place!

I had a wonderful time walking around the track with my friends. It was a beautiful evening. We had a large group, adults and children, walk for the team lap and I felt so happy, so blessed, so lucky to be a friend to these wonderful people.

Stacey stayed out all night long with Molly and Anna Grace, Madeline and Lily walked for four hours in the dark of the night and there were tutus on the track all evening and into the early morning hours.

Thanks again to all of you who participated by walking or by donating. It was a success by my standards and although it was exhausting (for me at least), it was one of the best evenings I have had in a long, long time.

Early Saturday morning, Richie and I arrived at about 5am to pick up Madeline and Lily. Stacey sipped her latte, Molly and Anna Grace were still smiling. We returned to the house and loaded up the car for our trip to St. Louis for the Collins family reunion. We met in the northern Ozarks at my uncle’s summer place. It was a beautiful day with my mom, brothers, sisters, uncles and cousins. We spent the night in St. Louis and I woke up feeling more rested than I have in a long, long time.

Tuesday evening we made it to the first volleyball night at Jane and Steve’s. More good friends and a chance to meet the two new members of the volleyball crew. Whew! I continued to feel good – until yesterday! I am back on antibiotics for another UTI. I had a pep talk this morning with Mom, where I cried, she comforted me, we both cried and then we both got off the phone before it got out of control. I do feel better today, but zapped. The combo of chemo fatigue and infection fatigue are holding me down. There’s always tomorrow, right?

This past weekend was a big step for me. I haven’t had the energy to be out much. I am glad my friends and family see that I am doing okay. Physically I am getting stronger and emotionally I am holding my own. I am a little too skinny, but working on gaining weight. But most importantly I feel stronger and I feel better. I am working on building my stamina. I just add a few more minutes of chores or movement everyday. This can only make me stronger and more confident in my ability to keep moving forward.

Thanks to everyone for Relay for Life, for support, for your energy, for being my friend. I am a lucky woman and things will only get better.

Love and hugs,
Maggie