Tuesday, December 29, 2009

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!

Wednesday, December 9, 2009

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.



Thursday, November 19, 2009

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….

Sunday, October 18, 2009

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!

Tuesday, September 22, 2009

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 28th 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,


Sunday, August 9, 2009

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,

Wednesday, July 29, 2009

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.


Friday, July 3, 2009

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.....

Friday, June 19, 2009

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,

Friday, May 29, 2009

Tutu Bad for Cancer

My dear friends and family,

My apologies to anyone who has already received an email about this. I am sure I don't have the email addresses for everyone who checks in on this blog, so here goes.....

I am here again to ask for a hand up and a hand out. My wonderful friend, Stacy Louise has organized a Team Backus for the 2009 American Cancer Society’s Relay for Life. It will be held here in Lawrence on June 12 starting at 7pm and ending June 13 at 7am.

The teams are usually comprised of 20-24 people who agree to raise $100 each for the American Cancer Society’s research to cure cancer. And then they have to have a team member on the walking course (here in Lawrence at SWJHS’s track) for that twelve hour period of time.

I have always received great support financially and more importantly emotionally from so many people in my community here in Lawrence, in St. Louis and beyond. I hope you can find it in your hearts to help again by sending in a small donation. Imagine if only 20 of you sent $5.00 how easily $100 could add up.

Our team quickly morphed from Team Backus to ‘Tutu Bad for Cancer.’ Because we are a bunch of 'last minute lucys' we are still assembling our tutus and I can’t share a picture with you (until after the event) you will have to use your imagination to see the 20 odd grown men and women (and some teenagers!) who have agreed to wear a tutu while walking around a track for an hour because number one, they can and number two, I think they love me a lot! I love them a lot too and am still humbled by their love and steadfastness.

My story is as familiar as any other cancer patient and so I will only say that I know that one of the reasons I am still alive today is because of the brave women who came before me and tried one or another of the cancer drugs researchers found to fight ovarian cancer. Much of this research is done with the support of the American Cancer Society. Ovarian cancer has not yet the cache of breast cancer (or the great marketing and branding) and we patients rely on people like you to help in ways like this to find a cure.

Please send your checks, money orders, (made out to Relay for Life) anything you can to me, earmarked for the Relay for Life event and I will pass it all on to the American Cancer Society. (email me separately for address!) It’s a good thing to do, it’ll make you feel better, and it will put a smile on my face. Those smiles are medically proven to help me survive. (I don’t know if that is true, but it sounds good and I am going to make it work for me.)

Thanks for taking the time to read this, you might help save someone’s life or at least give them hope for one more day and in the end that’s all we really can count on, isn’t it?

By the way, I’m doing well, still recovering and getting stronger. I’ve had minor setbacks, but nothing to really hold me back. My current treatment plan is the best so far and I am responding well. I have great hope for our future.

Many hugs and much love,

Friday, May 22, 2009

My positive mantra

You cannot receive your chemo treatments if your ANC (Absolute Neutrofil Count) is below 1.5. Yesterday my count was 1.3. My white blood count is just a smidge too low. So no doxil this week, maybe next. I am feeling a little down about this but am trying to use the number 51 as my positive mantra.

It also helps to stay positive when good things happen for your children. Madeline was awarded the Mustang Female Citizenship Award last night at the 9th Grade Recognition Ceremony. She was recognized by her peers as someone who "respects the individuality of their fellow students, looks for the 'good' in people, strives to achieve in school and extracurricular activities, speaks positively of others and cooperates with peers and teachers." Can you tell how proud I am? It says a lot to me about her mental health. We have had a rough couple of years here and yet she has remained true to herself and is doing pretty damn well. I sure love her.

Happy Memorial Day weekend. May all your memories be good ones.....

Wednesday, May 20, 2009

CA125 news

I had my monthly CA125 test on Monday and the results are stunning - to me. My CA125 is down to 51. I can't remember when it was this low before. I am, of course, riding high. Who wouldn't be? But I am also feeling a bit cautious. I will probably always feel this way. But I really like the sound of fifty-one. And I am going to ride that wave for the next four weeks - until the next test.
Keep that positive energy and the prayers flowing my way. It's working....

Friday, May 15, 2009

Back on the Wheel

Last night after dinner, Richie and I jumped on the tandem, Charlie got on his bike and we rode downtown. Charlie and Madeline switched places, she finished with ballet, and he on to Tae Kwon Do. We wheeled over to the Percolater for a loose gathering of individuals playing on the working bike sculptures our friend Eric has created for the annual Art Tougeau parade. It was one of the first moments since January that I felt myself bursting with energy.

I am sure the Vitamin C from earlier in the day helped, but the energy and excitement in the air was palpable. It really is Spring and the days I looked forward to way back in January are finally here.

This weekend will be a busy one. Madeline is performing in the end of the year Gala for her dance program with performances tonight, and three times tomorrow. There is a 'paint your car' party complete with the William Tell Overture (performed with car horns) tonight on the roof of the parking garage. Tomorrow is the official parade and after party. Charlie is busy with plans with friends and Saturday night will find us either in bed early or at a friend's housewarming. Sunday is a birthday celebration. The fun never ends.

Life never ends. You can step off the wheel for a while. You can watch it from afar. I prefer to be right in the messy middle of it, my hands and eyes and feet busy participating, but I will listen to my body and stop when I need to, rest and then start again.

On the cancer front, I am feeling strong, addicted to the VitC. I see the oncologist on Monday, will have blood drawn to see if I am ready for chemo (and another CA125.) Then on Thursday I will have the actual chemo. Madeline will go with me on Thursday. This gives us a chance to spend some much need time together. She can get some road time in for her learners permit. She can also see the VitC and chemo infusions and see just how innocuous the procedure is.

A year ago I was 'in remission', waiting for my baby girl to come home from Poland and feeling hopeful. Well, I have active cancer again, my babies are home, but I am more hopeful than ever. Life is good.


Sunday, May 10, 2009

Happy Mothers Day

Happy Mothers Day to all the moms I know. This includes those doggie mamas, too.

Thanks to my mom for teaching me how to be a mother. Thanks to my sisters and sisters-in-law and all the women in my life who have taught me about love, patience and forgiveness and important things like where to find the best shoes!

I am blessed to have two wonderful children. They wish they had more siblings which I take as a compliment. I have never wanted anything more in my life than to be a mother and if I were to die tomorrow, I would be satisfied I had experienced motherhood.

My wish for my children is for them to be happy in their lives. I don't care if they are rich or poor, tall or short, skinny or fat, as long as they feel happy when they wake up each day. My illness has taught me the importance of the the little things, of slowing down and appreciating individual moments of the day. In spite of the chaos of the past two years, I am happier now than I ever was before. And I credit Richie, Madeline and Charlie with that. They have taught me what is really important in life. I am loved and I am capable of love. Who could ask for more?

Wednesday, May 6, 2009

You know that friend you see infrequently? The one that always repeats the same information, the one who always complains or won’t quite read the signal that you can’t listen anymore, you need to go? Guess what? IT’S ME!!! I have decided I have ‘run-on of the mouth.’

I am so sick of listening to my cancer story. I am tired of hearing my voice saying the same thing over and over. I am tired of repeating my story. Can you imagine? It only took me two years to get here. I am a slow learner, like a dog at a bone.

Here’s the latest? Have I told you this before? I’m sorry. I seem to have blinders on. In March my CA125 was at 611. Eight VitC treatments later, many donuts denied, many pills (prescribed, of course) later my CA125 dropped to 91. It was like winning the lottery. It was winning the lottery. Something, maybe everything is working. I feel wonderful, overjoyed, even slightly self righteous about what a ‘good’ life I am living.

But I am tired of feeling like I am not living. Isn’t that a funny thing to say?

I don’t feel engaged with life, with the world outside of my comfortable four walls. I want my world to become bigger. The truth is that healing is not just about visits to the doctor, pharmacist, psychiatrist and infusion center. Healing is also about engaging in everyday conversation. It’s about talking with friends and strangers. It is in waking up to face the day with the challenge of the working world. I am not lonely. I am not depressed or sad. But I am tired of my own company and my own voice. Recently I applied for a job with the local library. Unfortunately for me, the scheduled phone interview came on the day I found out I had a bladder infection and a 104 degree temp. I soldiered on with the interview, but I probably sounded like an individual with a 104 degree temp. I can’t really remember because I was a little out of my head that morning. I am even considering responding to an ad for a customer service phone rep with the (gulp!) local media conglomerate. The truth is I am really good at customer service. I know how to talk to people who are usually anxious about something or need something (who else calls those help lines, anyway?) And I am especially good over the phone. Those whom I have worked with in retail and food service will remember my very unremarkable skills in those industries.

So, get ready world. Here I come again! I am so thankful for all the help, the notes, the gifts, the meals. We really needed all of you these last two years and I feel blessed to have our family and friends take such good care of us. I am glad to be feeling this way. It feels right to want to reengage with the world again. I am ready to ‘be’ something again. I know I am good at fighting ovarian cancer, and this doesn’t mean that you can’t ask how we are doing or how I am feeling. But when I tell you something you already know, let me know and we’ll move on to more important things!

Happy Spring everyone. I believe it is finally here.
Much love,

Wednesday, April 8, 2009

Holding Steady!?!

I haven't had much to say lately, which, I realize, is very unusual, but not much has been happening. I have been taking my meds, my supplements, my vitamins and eating well. I have been receiving twice weekly vitamin C treatments and visiting the oncologist, the urologist and the lab. Life is moving along at it's usual pace and I almost feel normal.

But yesterday, I had good news, news that needs to be shared and so share I will. I had blood drawn on Monday for a CA125. My previous results came in at 611 which prompted the oncologist to insist that I start chemo again. Monday's number was 620! As I have said before I really don't put much weight on this number - unless it's a good one - because it hasn't been a great indicator for me and it is just one of the diagnostic tools the docs use to evaluate the cancer. But 620 is like 611 is like 600. The most important thing is that it hasn't changed much. This means the VitC, the doxil (chemo), the diet and the supplements and vitamins are doing what they are supposed to be doing. They are holding the cancer in check. That is a really good feeling.

The nice weather today helps improve my mood and I am hoping for a long spring, a slow introduction into summer. I am thinking about trying to find a part time job, something low stress. It's time to reengage in the world. This is such a hopeful time and I am feeling it.


Friday, March 13, 2009

Back in the saddle again....

At my vitamin C infusion yesterday I met an angel. Her name is Olive and she was exactly what I needed and what I asked for when I prayed for help. I was feeling very shaky.

I had a checkup with my urologist Friday and a checkup with my oncologist Monday. I am healing nicely. I am not fully recovered from the surgery just yet and will have the catheter for at least another three weeks. But the time has come to return to chemo. I knew this was the plan and was not likely to change, but it is still depressing. I don’t know anyone who looks forward to chemotherapy.

I will go back on doxil, which I started way back in December before my latest surgery. Doxil can be relatively benign in terms of side effects or it can be nasty. It’s a crapshoot and I won’t know until it starts how my system will handle the side effects. I will be having a vitamin C treatment before my chemo and from what I understand that can really help mitigate the side effects of chemo.

I had a CA125 blood test of 100 in February. This made me happy, but the CA125 has never been a good indicator for me and I tried not to get too excited. And for good reason because Monday's CA125 was at 600. I am trying to focus on how I am feeling, which is GOOD. I feel strong.

Olive told me her story. She has been receiving vitamin C infusions for almost five years. She was diagnosed with ovarian cancer, had carbo/taxol (just like me) and her cancer was resistant to the carbo (just like me.) She had two years of doxil infusions and has been cancer free for three years. She wrapped me in her arms when we said goodbye and I knew she had been sent to help me. Olive is a survivor (just like me.)

So I am climbing ‘back in the saddle’ again. Chemo starts Monday, March 23. I will have infusions once a month and continue with the twice weekly vitamin C.

I am looking forward to the springtime and hoping for continued good health. As I write this, I see a female cardinal on a branch. This bird and her mate are here every spring. They nest in the grapevine on the north fence. I love to see the flash of color and know they have returned to our yard. It is a reassuring sign that in spite of cancer, life goes on.

Thursday, February 26, 2009

Hello again!

I realized it has been awhile since I posted. This is a good thing – no news is good news! I have been moving slowly through each day, trying to take things slowly and listen to my body. I am still healing and cannot begin a chemo treatment yet. I won’t complain about a break from the chemo, but as the days go by I feel anxious about not having the treatments. I worry about the tumor(s) growing again.

I continue to receive vitamin C treatments at KUMed twice a week. I am also taking vitamin and mineral supplements and am following a diet designed to stop feeding the ‘sugar hungry’ cancer. This approach (including chemo) is showing some positive results for some of the ovarian cancer patients in the study. I have great hope that I will be able to beat this cancer with this approach.

As I have gotten stronger physically, I have also regained my equilibrium and feel like I have crawled out of my depression. The first 2 -3 weeks out of the hospital were very hard. I was weak physically and mentally. As the weeks have passed, I have begun to believe I can make it again and that’s a great feeling.

This past week, I sent Richie to Bozeman, MT for a holiday. Our friends live there and they welcomed him with open arms. He had three days of skiing, four nights of good friends' company and came home relaxed and happy. Bozeman was good, good medicine. We are slowly, but surely coming back to our ‘normal’ lives. It feels good to be back among the living.

Madeline and Charlie are doing well – as well as anyone would be with a mom having cancer. I know they are sad and angry sometimes, who wouldn’t be? School and friends keep them busy and we try to help keep their lives as normal as possible. I love having them around. They are wonderful medicine.

I return to the doctor in about two weeks and hope to have more to share at that point. Thanks to all who have helped us to maintain in these past few months, this year. Times have been tough, but you have all made us feel wrapped in your arms. We feel very blessed.


Friday, February 6, 2009

I continue to get better every day. Yesterday I drove for the first time since December 17, 2008. It felt really wonderful and gave me a taste of the independence I crave and will have again soon. It was wonderful to pick up Madeline and Charlie and see their smiling faces. We went to the bakery for a loaf of bread and a treat to celebrate.

I am working hard to try and do something everyday, like make the bed, load some dishes in the dishwasher, feed myself. The good thing about the help we've been getting is that I didn't have to do much for myself. The bad thing is I could really get used to that - for a while anyway.

The last oncology visit was really uneventful. During surgery they found more tumor growth on my ureters. I had to have repairs done to the bladder and it has still not healed yet. I anticipate having to keep the catheter until the Spring. This is good and bad. I believe the tissue will heal so I am not afraid of any additional problems, but the catheter makes going out and about a bit of a chore. So, for now, I prefer to stay home, it's easier.

I struggle daily with the depression. Some days I feel very strong and know I am going to survive this cancer and other days, like today, I feel poorly and my mood reflects that. I either had a touch of food poisoning or a touch of the flu last night and didn't sleep at all. I had stomach cramps most of the night and day and stayed on the couch. This getting healthy thing is hard work.

Thanks for all the good wishes, meals, and help these last couple of weeks. We are so appreciative and know you are all out there pulling for us.


Thursday, January 22, 2009


I have been home now for ten days and the difference between day one and day ten is just enormous. When I came home the first day I was still full of the drugs that I had been having for the previous three weeks. I had no stamina, no energy, no ability to do much for myself.

Today, I organized my clothes. Mom made me do it because she’s been doing our laundry and she couldn’t figure out where anything went in my closet. I took a good restful nap, walked to the mailbox and went to Charlie’s junior high band concert. He was fantastic! My goal since I came home was to be able to go to this concert and walk in on my own two legs. And I did. And I got to see my baby boy play his music. He was so nervous. He was also so proud of himself and of course, I cried.

Tomorrow I go back to the doc for surgical follow up and to establish a new plan. I am getting stronger every day and I am ready to fight again.

And now, what shall my next goal be? Kick cancer's butt, mmmm, I think so....

Friday, January 9, 2009

Returning to the Real World

One week ago today, I had surgery to repair the various problems that have happened because of the tumors and various other things. I knew I would be having the fistula repairs and this was extremely important because they were causing incredible amounts of pain. What the docs didn't know until they got into the abdomen was the extent of more tumor growth around my bladder. So the surgery was longer and harder that we had imagined. The recovery has been no picnic either.

But today I really am feeling better. I have more color, more strength and a better smile on my face than I have had in a long, long time. I don't know when I will be released, mostly because my digestive tract is stubborn and until it decides to start pushing the old gas through, I wait. I sit, I read, I knit, I walk, I sleep, I sit, I wait, I walk. And none of this is a bad thing. I really need this quiet time for recovery. It has been extremely beneficial to have time to just 'be' and I think it really helps with the healing process. And the truth is that eventually, my digestive system will start working again, they will pull the NG tube, remove the staples in my stomach and off I will go.

Thanks to every one for all your prayers, good energy, kind words, and thoughts that have helped to carry us through these heavy days. When I look around at the patients beside me I realize how incredibly lucky I am. As hospital experiences go, this has been a good one, good nurses and good staff and a good quiet environment for me to recuperate in. Love and hugs and kisses to all,