Tuesday, December 21, 2010

Merry Christmas!

My best wishes to all for a very Merry Christmas.  We will spend Christmas with Richie's family. The usual holiday preparations have been made and we are relaxing with cozy days in front of the wood stove and watching all different kinds of movies.  Today's selection was The Quiet Man. Such a great movie!

I am quietly knitting the last of my gifts and enjoying the company of my darlings during the day.  They disappear, as the evening approaches, to visit with their friends.  Poor Richie sees little of them during the holidays.  As is the rhythm of their lives right now, they sleep late and stay up late.  But it is wonderful to see them doing normal things, having normal lives and pursuing normal activities. If they were staying home all the time, I would be a little worried.  This behavior makes me feel good about how things have been going lately. Despite the cancer we seem to be managing well.

I am feeling good physically. These last six weeks with only one chemo (instead of two) have been a little easier on my body. Even though I had also caught a cold last round, I seemed to weather all the side effects (chemo and common cold) pretty well. And this extra week at Christmas is the best gift I could have been given.  It feels quite nice and natural to have 'normal' days.

The latest cancer news is that there isn't much to report - much to my pleasure.  I am holding steady. The cancer is not advancing, nor is it retreating.  And I can live with that. I am very tired, but I have the energy for the little things. I can usually get a couple of small errands run, the grocery, the bank, and my favorite place - the library.  If I rest for an hour or so during the afternoon, I am good for the evening. The evening is the best part of my day. I love when the kids and Richie are home. Yes, it's the best part of the day.

I had chemo right after Thanksgiving and will go back in again for a round on Dec. 29. As long as the tumor doesn't change much and my blood work stays the same, I will continue on the carbo and taxol.  This next round will be my eighth of this series and I am weary of it, but if it is working for me I must continue it.  The trade-off is that I feel good when I feel good. The days of nausea are no picnic, but they are worth going through to have the good days.

More good days mean more time with my gang.  Each day with them helps me so much. They are my best medicine.  My thanks to all of you for your continued prayers, the meals and for the loving. We recognize how blessed and lucky we are this holiday season, we recognize it every day.  We wouldn't be in such a lovely spot if it hadn't been for the generosity of our family and friends. Pat yourself on the backs, my dears and I'll see you in the New Year!


Monday, December 6, 2010

Weathering the Storm

I've managed to weather another round.  Much to my surprise.  I went into this one thinking depressing thoughts.  I mean, how much more of this can my body take? Well, I am gambling on more because my intention is to continue on the same path.

I think I finally have the hang of it after seven rounds.  If I get a little something in my stomach just before they load me up with steroids and benadryl, I fidget for the following couple of hours and then exhaustion takes over. If I am coherent enough to ask for more benadryl during the evening I will sleep through the night.

The rub is I am never coherent enough to ask for the benadryl again and the night drags on.  The constant assessments and readings and changes in drug delivery make for a long, long night. I always plan for it to be different, but need to be more explicit with my needs BEFORE I take even the first of the pre-meds.

Mostly I am just trying to document the process, but also I am trying to remind myself of what I need to do. I have it written down and I have it in my head but I often forget, hoping that each round will be better than the last.

On the other side of chemo I have the usual nausea, aches, pains and fatigue and this time I had the unfortunate luck to also get a good, old cold.  C, M and I all suffered through the long weekend. I have to say that it was nice having their company for the weekend, but it is always hard watching your children suffer. I would gladly take on their woes, but I know I would not be doing them any favors.  So, C stayed home from school on Friday, coughed and sneezed the day away - and away from me.  I couldn't take the chance on getting more of his germs! Saturday was my day to just suffer alone. I played on-line mahjong and read the end of a good book.  And I napped - often.  Sunday was M's day to sit with me. She studied, we watched a good movie - The Painted Veil - and she napped.

So I have survived another round of carbo/taxol.  I hope that I am close to the end of this stuff. I hate this cancer. I hate the chemotherapy, but I do love being alive. When the bad days end, I can be happy with what I have.  And what I have is another day, another sunrise, another smile from my guys.  I think I can weather that storm....

Tuesday, November 30, 2010

Focus on the positive, focus, focus on the good

Tuesday morning, 8am.  I am going back in to the factory this afternoon for another round of chemo. On the one hand, I feel amazingly relaxed about what I know is coming. I have made all my follow-up appointments: acupuncture, nuelasta, reiki, massage therapy.  The pantry is filled with the foods I know will physically satisfy my hunger.  Rides have been arranged and I have had my pre-chemo conversations with the nurse. 
On the other hand, I am almost shaking with the anxiety that these ‘sessions’ bring.  M, C and Rich have all jumped on the anxiety train and we all feel a sense of desperation that none of us will ever get comfortable with.  There are always the niggling worries about how we will weather the chemo this time around.  Will this be the time that my body has a major reaction? Will another physical side effect intensify? Will the chemo finally make me sicker than the cancer? 
Rather than have a time and date when this will all be over, I’ve preferred to just know what will be happening the ‘next’ time.  I don’t want to be disappointed if we have to go into extra innings with the treatment and so I don’t want to know if seven or eight or nine treatments will be the limit.  And I realized last night that I don’t want to know because I don’t know what will happen next.  I have already run through most of the drugs that are likely to have helped me - and they haven’t. So what next? Well, next might be a drug that could help me but that has some really nasty potential side effects.  Those side effects make losing my hair seem like easy street.  I cannot even list them for fear of making them real and I am not even on the drug yet!!!
But more importantly, I head into this next round with a storehouse of lovely holiday memories. We spent Thanksgiving in St. Louis with my family and it was a wonderful holiday. I really do think family and friends are the best medicine I have right now. We had a delicious dinner on Thursday at Mom’s house. The whole gang was there (minus my nephew and his girlfriend - you were missed!!) so it was a lively and loud full house.  Friday started with brunch and then everyone went different directions. I found time for a much needed nap and that evening we had a great dinner at a local pizza place (a niece's current job.) Saturday, Rich and I took the kids around town to see some sights.  I had a late lunch with some friends and they did some more exploring.
As always, the best part of the trip was the ride home, it’s always great to have the kids all to ourselves for those four hours and is my favorite part of the trip. So rather than focus on the bad, I will keep pulling on my memories of Thanksgiving 2010. Thanks to my family for all the laughs, the good food and wine, and the chance to all be together again, even if just for a few days.
Love, lots of love,

Tuesday, October 19, 2010

Reiki and Peppermint Ice Cream

My usual transition through chemo day one and beyond means I am feeling sick - nauseous, bone-achy, bone-tired, headachy, and not up for much but keeping to myself, in my bed.  In ten (or so) days time I wake up again feeling like my old (and I do mean old) self.  But this round has gone rather well for me and I feel like sharing it.

I did two things differently this time.  I had a reiki treatment right after chemo.  I don't know how it is supposed to work or why it works, but it does.  I walked away feeling really good from the movement of energy.  I had a nuelasta shot later that afternoon, followed by acupuncture and more energy work on Friday.

The other thing I did was to really give myself a wide berth in the food department.  When I don't feel well, I will eat potatoes and corn and not beat myself up too much for going off the diet. This time, I told Richie that I just needed calories and what I really wanted was peppermint ice cream.  And that's what I had on Friday night.  It was devine. I love that stuff. Reminds me of Velvet Freeze and childhood and of true indulgence.

So, I am feeling good, slowly crawling my way out of this latest, longest depression I have been in. I feel strong enough to try for that walk tomorrow. I feel happy enough to join the living again.  Thanks for the meals, the prayers and the good energy coming my way......

Monday, October 11, 2010

I'll Keep My Dancing Shoes On!

Had a great weekend away with Richie. I went with him to Birmingham, AL to the Barber Festival.  It was wonderful to ride around with him on this little 160cc Honda. We both had such big smiles on our faces.  I was able to meet so many people that have become important to him in the world of vintage motorcycles.  And they all love him. Makes a gal proud, but not surprised. He is such a wonderful man. I am thankful for him, and all his family and friends. And for all they do for us...
The biggest surprise of the weekend was an unexpected visit from my brother and sister! They were only two hours away and made the trip down for a short period of time. But we had a great visit and took a quick trip out to the motorcycle fest. They got to give Richie a squeeze and take their own trip around the museum grounds on the honda. There were lots of smiles and hugs all the way around. 
I had my usual amount of energy (low) and spent time reading in our room at the hotel when I wasn’t out at the track, but I loved being away from home with just Rich for the weekend. I love our house and the home we have made here, but I spend a lot of time just being inside these four walls. I am not complaining and I really don’t want it to be any other way right now, but the weekend was a great reminder that there is a world out there that I still want to rejoin and I need to keep my dancing shoes on - just in case.
I really missed the kiddos.  I feel very selfish about my time with them.  I am not being negative when I say this, but I have no idea what my future holds and I want as much time with them as their teen age lives will allow.  But it was also very good for them to have me gone for the weekend. They need to stand on their own (even though their wonderful cousin was here with them) and they need a break from cancer every now and then.  We all need the break and this past weekend was really just that!
Our entire weekend was uneventful, which is always welcome. I left town feeling a bit nervous - the ‘what ifs’ sounding loudly in my head. To have made the trip and not had problems gives me hope.  Our homecoming was good - it’s always good when your children are happy to see you - and they were!!
Recovering from the weekend has been my primary goal today - and I was lucky enough to have lunch today with three of my wonderful girlfriends.  We talked all about the things we needed to catch up on with each other and very little about the cancer.  I like it when things work out that way.  I am weary of the cancer story. I don’t mind answering direct questions, but certainly there are more interesting subjects than the %^&$#!! cancer.
I am scheduled for my next chemo tomorrow and that will be number five for this round.  I don’t know how many more she will prescribe, but I feel like I can handle a few more. Richie and I will meet with her sometime in the next few weeks to determine how we will move forward. There is the question of the tumor on my bladder to consider and what sorts of therapies are available to me as we move forward.  I know that there are still many in the arsenal, but not all are available to me, and I would like some information and time to prepare for any plans Dr. C thinks we need to make.  
A cancer blogger friend has decided to enter hospice.  A sobering day. I am lucky to still be alive, I am determined to keep fighting. She has been an inspiration to me, strong, sassy and full of hope.  

My latest mantra is 'I am holding my own.' I am not getting any worse and I feel pretty stable. The fatigue is pretty constant which makes the meals that much more wonderful. It’s so good to have a home cooked meal at the end of the day. Your generosity (you know who you are!) is soooooo appreciated. We feel your love and good energy every day. I know the prayers are working, keep ‘em up, please?!
Love and hugs,

Wednesday, September 29, 2010

Another update

Good news! I do love to share good news. After I started back on the nasty carbo/taxol chemo treatment in July, I had an immediate drop in my ca125. I think it went from 357 to 62. And then it started to creep back up. Two weeks ago, it had reached 109 and I was thinking that this was an indication that the therapy was not working for me. But today, I have positive results from yesterday's ctscan and bloodwork. My ca125 was at 111, really a negligible increase. The ctscan shows that I still have no metastices to my chest and abdomen and the tumor on my bladder measures slightly smaller than the last scan. How about that news? I have recently been telling people that I am holding my own and I REALLY am! Maybe this is an indication that the roller coaster is changing course yet again. I'll take that because I like the highs. This also means that I must continue on the course I've chosen, more chemo, more nausea, more fatigue. It took a long time for me to grow this cancer, it's going to take a long time to get well.

We are all doing pretty well. M and C continue to amaze me. I cannot imagine really, how difficult it must be to be going through the teen years WITH a mom who has cancer. Yet every day they get up, go to school and continue to live their lives. This is really sappy but it makes me think of the lyrics from the song 'Something Good' from The Sound of Music.

Nothing comes from nothing
Nothing ever could
So somewhere in my youth or childhood
I must have done something good

I really do think that if nothing else, if my life ends soon, if I die tomorrow, my beautiful children will live on and for that I am so very thankful.

Richie is doing well too. We both love Autumn and this time of year just makes me happy. I love the change in season and the cool quality of the days. I love jeans and sweaters and bundling up in a jacket. The only hard part of the weather now is my bald head. It's a little chilly with out any hair and my ears get so cold. A few weeks back a friend sent out a plea for headgear for me and I was the recipient of some rather beautiful scarves. I look rather elegant in them and I know that one day my hair will grow back. There is comfort in that.

We are planning more home improvement projects. We are always planning more home improvement projects. We'll probably never be done working on this house and that's okay because we are doing something we love. Or rather, Richie is doing the work and I am watching. I am going to go with Richie to Birmingham, AL for a business trip next weekend. It will be a bit of a anniversary trip - 20 years - this last September 22.

Retta has organized meals for us and we have a hot meal coming almost every other day. It is wonderful. On the days I feel good I can usually muster enough energy for a meal, but not always. These meals have been a godsend and a great chance to see people that I don't usually get to see and thank them in person for their generosity. We are very, very thankful.

My thanks to each and every one of you for your prayers and your good energy. It's working, it's really working!
Love and hugs,

Thursday, September 23, 2010

A Milestone

Richie and I celebrated our 20th wedding anniversary yesterday. What a good feeling. I have now known him for almost half my life. Although the last few years with cancer have been devastating, I am still happy to be where I am, with the people I am with, living the life I am living.

Sure, I would get rid of the cancer, but the rest of it, it’s all been a wonderful ride.

On my way to making more memories....

Saturday, August 21, 2010

Four Weeks Later......

So much can happen in four weeks time.

School has started in my neck of the woods. Both M and C are settling in nicely to their new routines. They both like school. M loves the learning and the challenge. She is social and has a good group of friends, but is really driven by the learning. She is a natural leader and likes to be in control so the rhythm of school and the setting provides her with a great routine every day. She has her bad moments, even days, just like every other teenager, but for the most part, she loves school and is really happy to be home.

C, on the other hand, is much more social and likes being at school mostly because of the social interactions. He is intelligent, but doesn’t want to work as hard. If he can just power through something, get it over with and get back to his friends, he is happy. He is not a morning person and half the battle is getting him out the door with something in his stomach to carry him to lunchtime! I think he will have a good year though. The teachers and staff are targeting him and kids like him as leaders and encouraging them to step up. He is responding in a positive way and it is a pleasure to see him respond. He is such a generous young man and honest to a fault, I know he will do well.

So, it is nice to have everyone back in a routine. Richie and C went to Camp from Aug 2-12. Mom came to stay with me so that I could get through the Aug 3 chemo. She was a wonderful nurse and there really is nothing better than having your mama take care of you when you are feeling down. I am so glad she was able to be here for me. We had a wonderful visit, some really good talks and a regular cry every morning. I am so thankful and lucky to have such a wonderful mom.

Richie and C came home the same day Mom left. It was a great homecoming. They were road weary, but had had such a great time on the road and at Camp. I think their time together was very special. They both remarked on how nice it was to spend time with each other. They had great talks, hiking, boating, swimming, played games and ended each evening with a sauna. It was a memorable vacation.

M returned home the following day, August 13. I cannot describe how wonderful it was to touch her again. She looked just the same as she did when she left, and yet she looked completely different. She is even more self assured and confident. I am so glad to have her back home. Her Russian adventure was well worth it, but I think next summer we’ll encourage her to stay home, stay close to us, find a job and hang out with her friends.

On the cancer front, I with be getting another round of carboplatin and taxol next week. This will be my third round of this combination since July 13. I had a CTscan the week of July 19 and the results were a bit alarming. I have a new growth on my bladder. Dr. C asked us to come in to the office to discuss how to move forward. After I was given the actual results of the scan to read, I noticed a discrepancy from the CTscan results given in April. The upshot is that the April CTscan did not accurately report the growth on my bladder. Both Dr. C and I made a decision for me to take a break from chemo during this time. Had we had the correct information regarding the growth on my bladder, she would not have allowed the break and I would not have sought a break from the chemo. This is, of course, quite devastating and I am very angry. I would never, never have taken a break from the chemo if I had known there was a new tumor on my bladder. The only thing I know to do at this point is to keep moving forward.

With this new knowledge, Dr. C advised me to not travel. She thought it would be best to stay on the chemo schedule - no breaks. Richie and I decided she was right. We certainly didn’t need of repeat of July 2007 - another emergency in upstate NY. And I cancelled my trip to Idaho for river rafting. I didn’t need to be in an even more remote wilderness with a medical emergency. My chemo schedule would have also interfered with that trip, bringing me to Idaho roughly one week out of my infusion. My counts would have been low and I was just too damn nervous to put myself in that situation. The good news is that my CA125 is going down. It was 357 before the July 13 infusion and was 62 this past Tuesday. I really hate that CA125, but it gives me information and good or bad, that's what I need.

So the end of our summer didn’t really pan out like we had imagined. I am satisfied we made the right choices and I am hopeful that I will be able to do more next summer. I feel remarkably good for being back on this carbo/taxol routine. The worst days are the days right after chemo - nausea, headaches and the blahs, but the good days are really, really good.

Today, I am sitting in our living room, with M and C, watching a movie. C just made eggs and sausage for their lunch. The dogs are hoping for a few dropped crumbs and Opel, the new kitty, is watching from her perch on the couch. It is hot, hot, hot outside. Richie is in Wisconsin this weekend. I have most of my gang right where I need them and there’s not much more a gal can ask for than that. And me? I am content.

Many, many thanks for keeping us in your prayers and sending all that positive energy this way. We are also very thankful for the great meals we’ve been gifted. Those meals help more than you can imagine. Even when I feel good, I am incredibly tired. It’s hard to muster the energy to make a meal at the end of the day and your meals are very concrete help for my family. We are blessed to have all of you in our lives.

Love from all four of us,

Sunday, July 18, 2010

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.


Saturday, June 5, 2010


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.


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

Wednesday, May 19, 2010

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!


Wednesday, May 5, 2010

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.


Wednesday, March 31, 2010

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,

Tuesday, March 2, 2010

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,

Thursday, February 4, 2010

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.

Tuesday, January 19, 2010

To Chemo or Not to Chemo

I have made it through my fifth course of carboplatin/gemzar relatively unscathed this time. The side effects are getting worse and I had a very yucky 48 hour or so period in which I was miserable.

Today is chemo course six, day one.  I was pretty anxious leading up to this course. Is this my last carbo/gemzar? I don't know.  I saw Dr. Chapman this morning at about 8am. The plan for now is to have a CTscan and a physical under anesthesia and then we will meet to determine the nest course of action.  I don’t know if this will all happen in the next week or next month, but for now I will just enjoy each day.  I have Day 8 to climb over next Tuesday and until I hear from my chemo nurse, I don’t know what else or when.

I would like to believe it is the last and that I can go on to something less invasive, but what do I know  (?), I am not the doc looking at study results, test results and the big cancer picture.  But I am the patient and I do end up having the shitty side effects and living in pain and uncertainty. And that's not a whole lot of fun.  But then the bad days pass and I feel good and I think, I could do this for a very long time. When the price becomes too steep, the side effects too persistent and if my quality of life becomes compromised, then I will look at these things in a different light.
We enjoyed a warm up in the weather and this has helped pick up my spirits.  The holidays were wonderful and I try to remind myself daily about how far I have come since last year.  Hell, I have come pretty far since July of 2007!  I am doing the best I can at trying to live one day at a time.  Time and hope really are good medicine.

One year ago, I was just out of the hospital and weak as a kitten.  And the recovery process this last year has been long and sometimes very, very hard.  But today I am good. I am stronger, healthier and happier. 

There is a website/blog I have been visiting recently called Being Cancer.  Here is the link. http://beingcancer.net/2010/01/14/ I really like it because it is written by a cancer patient for cancer patients and has links to lots of great information.  The post for 1-14-2010 is a wonderful essay about being hopeful and learning from cancer.  I urge you to read it! This site has also been linked to my blog, the administrator liked what I had to say, it was very flattering.

I send my good energy and hopes for you all to enjoy have a good winter. I am hoping for a little more snow, a couple of cold days which force me to stay inside, and then when the spring comes, I will jump into that season full of energy and both feet!