Summer Update

It's been a while since I have updated you all, I find it hard to do because I end up crying through most of it, but here goes....bear with me.

It is Sunday morning and quiet around our house.  C and Richie are out riding the trails on their mountain bikes. The dogs and kitty are sleeping off their morning meal.  M is still in Russia, she returns August 14.  She has moved in with a new host family.  She had been having some problems with the first family. This was their first hosting experience and I am afraid they were ill prepared for the experience. She is now living with a younger couple, their three year old son and their small dog (with three new puppies).  She sounds much better and I believe this will be a much better experience for her. 

I am slowly recovering from my chemo treatment that was given on July 13.  I knew I would return to treatment when I decided to take a break in March.  And oh, what a glorious break it was! Although I have had short breaks from chemo since my cancer was diagnosed in July 2007, most of those have been because of surgeries, or tests or procedures that needed to be done. In March, my CA125 was at 16 and as has been the routine with Dr. C, it was time to do a CTscan to determine what might be happening internally.  Things looked good and there was no rush to the next treatment. My hope was for a permanent break, but that was not to be. After a few weeks, my CA125 started to climb again.  When I saw Dr. C in May she was ready for me to start chemo treatment again. My CA125 had risen to about 140 and she wanted me back in treatment.  I wanted more time.  I wanted to get M off to Russia and enjoy some more time without the side effects that have become my constant companions.  

So, on July 13 I was readmitted to KUMed for the beginning of yet another chemo cocktail.  This time around I am getting carboplatin and taxol. These are the first line chemo drugs for ovarian cancer.  I was not very happy about this combination.  I don't want to lose my hair again and the carboplatin is nasty and makes me very sick.  But Dr. C believes that I respond well to the carbo and with my most recent CA125 coming in at 357, I need the big guns again to blast those poor misguided cancer cells out of my system.  It is terribly depressing. I keep hoping that I will beat this nasty disease only to have those cancer cells keep growing and beating me up.  I am very tired, finding it very hard to pull myself up this time. I had a nuelasta shot (white blood cell booster) on July 15 and while I know I will be glad for it when my blood count drops, the side effects are almost worse than the chemo side effects.  Achy bones, muscles, and a constant headache are exhausting.

Retta has organized meals for us and that is a great relief.  Richie is very tired at the end of the day and I have very little energy.  So it is nice to know that there is food for all of us and bright smiling faces delivering it. I have rides to and from Kansas City organized so that I do not have to drive home after my 24 hours of chemo and that gives me a chance to visit with family and friends.  

C is a good nurse. I think he is doing well, he has more faith than any of us in my ability to beat this.  I am a very lucky mama to have such a believer in my corner.  He stayed by my side all day Friday.  I couldn't ask for a better companion.

The bright side to all of this is that Dr. C continues to encourage me to build memories with my gang.  And we'll work the chemo treatment around that.  A little depressing, no? But she is right and I want Richie and the kids to remember the good times and not the nausea, the achy bones, the neulasta shots.  

So, we are headed to Camp the first week of August. Richie, C and his friend D, and I will make the great trek East. We plan on staying at Camp until August 11th. School starts the 12th and the boys will start a day late, but Richie's work schedule was difficult to manipulate this year.  M will return on August 14 and then my world will be whole again. I know she'll leave home someday to start her life, but she's only 16 and she belongs here with us!

In September I am going on a whitewater rafting trip in Idaho on the Salmon River. My cousin Ellen will be along on that trip and I am looking forward to seeing her and to be with a bunch of other cancer patients and survivors in the wilderness. I know that sounds a little crazy but I think I get to be a little crazy at this point in my life! I can let the world fall away and take in the beauty of the experience.  

Richie and I will celebrate 20 years of married life this fall and are hoping to get away for a weekend in late September or October. This will depend on how I am doing, of course, so my plan is that I will be doing well.  

Enough of the sad talk.  It's a beautiful looking day outside. It IS Kansas in July, 95 degrees and 99.9% humidity (:)), clear blue skies.  I might have cancer, but I am not stupid, I am sitting in the air conditioned house and plan on staying here the rest of the day. 

I hope all of you are doing well, enjoying your summer, loving your families.  Keep the good lovin' coming our way. We accept all prayers, good intentions and love.  We always need your love.

Maggie

Really!

I have been having a hard time lately. I really don’t want to go back on chemo. I really want to be healed. I really want to have a life again. A life that doesn’t include cancer.

I really would like to begin again.

But that is not my reality - yet. I might be one of those women that has chemo for four years, five years and then maybe remission. I might also be one of those women that never has remission. I might never. I faced that reality last fall. Last September I faced that. It was brutal, it was awful. I cried for days. Days. I hated those days. There were many long talks, phone calls. I needed to tell each and every one of the people in my life, that I love, love, I needed to tell them personally that it wasn’t going to be pretty, or a beautiful story. At least not yet, not at that time.

And I am still not there yet. I really thought that with four months of CA125 tests scoring below 35 that I was on the way to good health. What I am is a chronic ovarian cancer patient. I will have this for the rest of my life. I will be sick from the treatment for the rest of my life.


BUT


I will also have periods of relatively good health while I am in treatment. And that is what I am experiencing right now. I feel good, I have low energy, but I don’t feel sick. No nausea, no overwhelming fatigue, no devastating side effects. Today I feel good. And isn’t that all we really have? Isn’t today good? I think so.....

I am content.

And have overused the word really.

:) Maggie

Chemo Free Days

Today I am at home having a vitC treatment. I love these days. It is so nice to be in my home and in my jammies.
 
I am not watching the calendar, nor am I counting the days, but it has been almost six weeks since my last chemo treatment. I don’t know if that was my last treatment or not, but I do know that I love, love, love being off chemo! It feels so good to FEEL GOOD.

Last night we went to C's last band concert of the school year. It was wonderful. His instructor is a fantastic teacher and the band is talented and fun to watch. They did an excellent job. I was reminded that last year at this time, I was fighting my way out of the hospital so that I could attend a ceremony for Madeline’s 9th grade recognition. I remember telling the doctor, who was reluctant to release me, that I didn’t know how much ‘time’ I had and that I wasn’t going to waste any of it laying in an uncomfortable hospital bed missing my child’s shining moment. I was full of piss and vinegar that day, but I was also scared to miss any chance to see my babies shine!

Fast forward one year – I am walking the dogs for an hour each morning (about 3 miles or so), taking a good bike ride during the day and taking a spin with Rich after he gets home from work. I visit the library, the post office and sometimes the bakery:) on my brand new blue bike! Everyone deserves a little treat now and then! I start a spin (bike) class the first week of June and plan to start yoga again about the same time. I feel like I can do anything right now and I haven’t had any steroids in about six weeks! I sent in my application for the rafting trip yesterday and mowed the back yard. Last year, I was on doxil and could not be in the sun. I spent a lot of time sitting on the porch. While that was peaceful and calming, it is far better to be on the mower and planting flowers.

School is almost over. M leaves for Russia in less than six weeks. I had a good cry today about that one. She reminded me that I would spend the first week missing her, the second week getting used to her being gone, and then she’d be home in less than five weeks! She seems to have adopted my tendency to rationalize anything. I am thankful for that.

Charlie is finishing eighth grade and will be in high school next year. Yikes! How did that happen? I am looking forward to being able to concentrate on just Charlie. He is an amazing person and is often overshadowed by Madeline. He will have some time to shine while she is gone.

I go in to the hospital tomorrow for a short procedure. I am having stents put in my ureters. This will give the urologist a chance to look at everything, make sure my urinary tract is healthy and see what might be causing the hydronephrosis. I should be home by the end of the day.

I am looking forward to some warmer days, we’ve had lots of rain and not enough sun for my liking, but really I am happy with anything. I am just happy, it’s as simple as that. Send your good energy, prayers and thoughts my way this next week. I have another oncology check-up on Friday, May 28. I hope to share good news, but I am prepared for whatever life throws at me! I am doing my best to enjoy every day, chemo free or not!

Hugs,
Maggie

Good Life News

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

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

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

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

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

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

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

Love,
Maggie

On a precipice...

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

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

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

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

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

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

Love and hugs,

Maggie

Life News!

My CA125 is down to 5!  

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

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

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

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

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

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

Love and Hugs,

Maggie

Good News!

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

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

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

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

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

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

Maggie