Moving right along

I belong to an online support group of other ovarian cancer patients and survivors. In the last two weeks, we have lost three more women to this awful, awful disease. Please do me a favor and take a moment to think about those who are suffering. And I don't just mean suffering from cancer. Life is hard. But being alive and living can be so wonderful and rewarding. We are all lucky to be here and we are all going to die someday, but for those who leave before they have finished their business, it is a tough road to take. Just send out your good thoughts and prayers for those suffering in this world. It works, prayers and positive energy work!

In my life......I sent out this update to my family and some friends. Please feel free to share this. If I can help just one person avoid the devastation of cancer (and I think I have!) then I have accomplished a wonderful thing in my life!

I have had two rounds of cisplatin and gemzar at this point and I am responding well to the treatment. My cancer markers are coming down, and we are very happy with that. If only if wasn’t so nauseating and exhausting. It is the same old routine with me spending most of my time recovering from a treatment and then just when I start to feel better, it is time for the next round. It is so hard to choose to continue chemotherapy and yet so hard to stop knowing that I might just find remission or another few months to watch my guys explore the world. 

My new chemo cycle leaves me no days of ease. I have a 21 day cycle and am vulnerable to all kinds of nastiness for days 7-21. During days 1-7, I am nauseated most of the time. My weight is dropping a bit, nothing too alarming, but I hit 130 this week and have to get more calories. Ice cream is good!

Round two has left me with a UTI that really kicked my rear. After all these years, those infections can still sneak up on me. I spent this last Friday at the oncology clinic getting fluids. Good Dr. Stein didn’t even try to put me in the hospital. He knows how much I hate it, I do so much better at home, and he helped me get home by the end of the day Friday. Today, I am feeling better. Sore from the retching and trying to eat easily digestible foods so I can regain my strength. He will not have me start my third round tomorrow, smart enough to know I need a break.

We had a good Christmas, the four of us. There were lots of ‘goings on’ with nieces and nephews that came to town for the holiday. I was physically and emotionally under the weather though. I chose not to participate in many of the activities. There is no cure for this part of the disease. I am finally reaching my days of anger and despair. Why me? Why not me? It was good medicine having the three most important people in my world with me for days on end. They make me laugh and cry and they bring me such joy. I cannot fathom giving up just yet. Oh, how I love to be with those two! Richie even took a few well deserved days off and we spent a good amount of time just being with each other. They spoiled me rotten on Christmas Day. I have a hard time with all those gifts, it seems a waste to shower me with things that I may or may not have the energy or strength to use. I must view them as incentives and find the time and energy to do just that.

Madeline and I drove to St Louis for the first full weekend of the new year. Those nine hours in the car were some of the best of her visit. Unfortunately, a big winter storm was headed our way and we had to cut short the weekend, but not before we spent a great evening with the Murphys.

There is always so much to talk about and share. I feel like I am bursting with things that must be said, stories I must share and she has so much to tell me right now. She is blossoming. There is so much going on concerning school, internships, her future, to what she does and doesn’t want to do. She has so many opportunities and decisions to make and it is wonderful watching her make her stand and become more independent. It even felt good when she told me it was time for me to back off. She will ask for advice when she needs it, but otherwise she would like to make her own way. I admire her. I was not so independent at her age. We are so blessed to have her in our lives. 

Charlie has applied to a few different universities, two of which are in Philadelphia. He applied to both Drexel and Temple University. He also has mentioned some interest in continuing to pursue woodworking. He has been taking wood shop classes at LHS for the past year and a half. He is quite talented, in my humble opinion. He recently made the most beautiful bowl. He and Richie harvested an Osage Orange stump and then Charlie machined the stump down to a bowl. The wood grain and color are just incredible. We are so damn proud of him. Like his dad, he seems to be able to do many different things, and do them well. 

I have also encouraged him to take some time off and just sit out the first year of college. I wish I had done the same. (But am glad I didn’t for then I wouldn’t have been on the path that led me here to Lawrence and Richie!) I hope I am helping my babies the right way, but nothing would make me happier than to see them living in the same town, just miles from each other. I think they would both benefit from the support they could offer to one another. Maybe I have encouraged too much dependence, but I cannot think of a better place for them to be than with each other in these next few years. Whether I live or die during that time, they will need each other very much. 

Recently, my wonderful niece Sara, made a beautiful teal colored flag for me to hang on the front porch. We are using it as a sign to help everyone know when is a good time to just ‘drop by.’ If you can’t call ahead and find your self in the neighborhood AND the flag is hanging on the porch, we are up for visitors and hope to see you. But if the flag is not out, please reconsider. My alarm dogs make plenty of noise even if no one knocks at the door so I am trying to maintain some semblance of peace when I can. 

I hope all of you wonderful souls out there in our world know how much we love you and are thankful for your presence in our life. And to all of you special ones who have made dinner, helped Madeline recently and continue to pray for us everyday - thank you. I love you all - to the moon and back again, a hundred, million times. 

Back to that stupid cancer thing....

It's been so very long, months now since I update the blog, but I have been living. Enjoying life, dealing with cancer and generally not feeling like this story needed much more telling. I wanted to just be the old Maggie that I have been for some time with out feeling responsible to myself or others about keeping anything up to date. 

Summer was wonderful in the sense that Madeline was home and we all had an easy time of living together again. She was back for that first summer after being away at school. It seemed easier that the summer before when we were all so anxious about her leaving. This summer we set out our objectives and hopes for each other and that made our time together even that much better. 

The other part of the summer that wasn't quite so easy was dealing with the cancer. The study at the NIH ended for me in May. I didn't pass the first round of tests that determined whether or not the drug was working for me. As is always the case, when I have not been taking active chemo treatments, the cancer grows on and on. And while I had been busy visting the NIH, the cancer had grown around my anus and was causing me severe pain. 

Dr. Chapman at KUMed and I decided that I would best be served by not coming back to KUMed and to seek treatment with Dr. Stein in Lawrence. The next step was radiation. We have held off on the radiation for a long time. In the US, it is medical protocol to use chemotherapy first and then radiation as a last resort. Once an area has been irradiated it is dead and cannot then pass chemotherapy to new diseased tissue.  So I took some time during the summer to get the pain under control. After a family reunion in upstate New York and then a wedding in Colorado, we returned to Lawrence and I had 20 rounds of radiation. In my opinion, chemotherapy is ten times harder than radiation, but radiation also presents it's own horrible and miserable side effects. I was lucky to only suffer from some extreme exhaustion for a time. 

I then enjoyed my break from radiation. I went to South Carolina with my sisters and brother in law. I went to Philadelphia with Richie to visit Miss Madeline and I have been spending good times with Richie and Charlie while at home. And as always on this journey, it is time to return to the serious business of cancer.

My goal when I was first diagnosed was to make it to Madeline's high school graduation. That happened, it was wonderful and now here we are almost two years later and my new goal is to make it to Charlie's graduation. I want to watch my baby boyo walk up and receive his diploma and then watch what comes after. For Madeline, we had a big, old bash and while Charlie is not likely to ask for the same, we will still celebrate his accomplishments in whatever fashion he chooses! 

Back to the stupid cancer thing, I had radiation to control the pain the cancer was causing in my lower pelvis. That was very successful, and provided me with the break I spoke of. But the cancer was also growing on my liver at the same time and now, 2 months later, it is causing concern from Dr. Stein. In August, the ctscan showed an approximately .9mm sized growth, now I have three separate growths!! I have two choices, to return to chemo treatment or to do nothing. 

I choose to have another series of chemo treatments in an attempt to get to May 2014. Richie, Charlie and I will meet with Dr. Stein on Monday afternoon.  He is likely to encourage two different kinds of chemo and I will likely do whatever he suggests. If I can get another six months along, it's worth all the fatigue, nausea and aches that the chemo will bring. 

So, hang on to your hats, you might see me moving around with that sour face again. And that would be good, I hope to be walking around for a bit longer. 

Thanks again for the love, the hugs, the food. We're headed to St Louis for our Murphy Thanksgiving celebration. There's not much that makes me happier than to hang out with my mom and my brothers and sisters for a few days. And don't worry, I still have some living to do and we all know that there's great mystery in living, there's no telling what will happen!!

A Bit of a Pickle

We are slowly clawing our way into spring. Today is very windy, but supposed to reach the mid 70s! Today, Charlie is racing in Bizarre, KS (love the name of that town), Richie is working away on his Mercedes transmission and I am resting in bed. 

Last week, Mom was visiting and on Monday we recieved news of the death of a friend. Bo was diagnosed with cancer of unknown origin about a year ago. He was a great guy, and lived a really full and happy life. This last year, he lived even bigger and better while fighting for his life. The news was devastating. It hits so close to home for me and mine. I feel so, so sad and quite terrified, to tell the truth. 

Bo was married to Carol, whom I had become close to this last year. We found common ground with each other, two moms trying to hold it together. She and her boys will be fine, I know, because we have this incredible community of friends here in Lawrence. We won’t let Carol and her boys down, and I know the same thing is happening for me and my family. 

I have been on the NIH protocol now for a month. Things seem to be going well. Generally, I am feeling good. I have had three treatments, then this past week I rested. I started showing signs of side effects with the third treatment and was able to manage those with no difficulties. After another three treatments, I will have additional tests done and then a week or so later, will have my reevaluation. If the cancer has grown more than 20% I will not be allowed to continue with the trial. 

This past Thursday, though, I found myself in a bit of a pickle. I had let myself get dehydrated, developed a bowel blockage and had to go to the hospital early Friday morning. I got relief and was released late Friday afternoon. I have been resting, drinking water and trying to eat a bit.  I made the decision this morning to cancel this weeks trip to the NIH. After speaking with the doctor on call, I decided that it just didn’t make any sense to push myself. I do not feel very well, my gut hurts quite a bit and I haven’t been able to eat much so I am weak. 

I will have more information about the study and how this afftects my participation when I talk with the nurse tomorrow. This is really the best choice for me, although I am still coming to terms with it. I am worried that it will cause me to be dropped from the study, but the doctor said they will work with me. It’s all very frustrating - trying to get well - and having a roadblock in the way. Sigh.

Otherwise, all else is well. Madeline is finishing up her first year away, she should be home sometime in early June. We are looking forward to having her around for the summer. Charlie will finish up his junior year in late May. I have hopes for a good and busy summer with my gang, but I also don’t usually plan that far ahead. I have today and am thankful for that. Tomorrow will bring whatever it brings.  

Thanks again for all the love, the prayers, the good energy and all the other little and big things you all have been doing for us. This summer, I will mark the sixth year of my diagnosis. I know that I am here still in large part because of the love and support from every single one of you. And I thank you again and again and again.

love,

Maggie

On to the Next Adventure - the NIH!

Hi Everybody, Whew!! What a long, long week. Richie and I went to the NIH on Sunday, February 24th. Today is Saturday, March 2 and I feel like a month has passed in the last week.

We arrived in DC and were picked up at the airport by the always fabulous Sue!! Sue and her husband Rich were our hosts for the overnight stay. Sue is my sister from another mother. She made us feel so at home, so loved in their home in Washington! We came back from the airport to a glass of wine, pork tenderloin and the Oscars!! We all had so much to share and talk about, but after dinner we all fell fast asleep.  It was a hard night, both Richie and I tossed and turned in anxiety and worry about the next day. 

We arrived at the NIH the next morning at about  8:15, an hour earlier than they recommended, but with the DC traffic we decided to leave with plenty of time necessary for any delays. Getting through security and admissions were taxing enough, the rest of the day played out much as expected. I had labs drawn, waited, met with the first doctor, waited, more labs, waited, and finally after a long time, met with two of the doctors from the research team. I was offered a spot in the trial!!!! I felt very triumphant, and then we waited a bit more. By the time we left, I was so exhausted and tired from the process that I was just relieved to leave the NIH campus. 

As TJ had warned me, the campus was HUGE! And I am not exaggerating. Honestly, the entire DC area is just jam packed with humanity. I was excited to see the Capitol and the Washington Monument when we arrived the night before as I have never been to the DC area, but the morning drive to the NIH was overwhelming (read: traffic).  I am a homebody and small town girl by this point in my life and as much as I am excited about taking some time to enjoy the DC area, I found every thing to be overwhelming. 

Mid day Monday, we received word that the second leg of our return flight (STL to KC) scheduled for Monday night was cancelled because of the weather EXPECTED to arrive late Monday night in Kansas!!! AAARRRRGGGGGHHHH! I still have not developed any patience for these kinds of delays. I know, I'm slow about some things! I relied on Richie to take care of everything. And he did, but he was very anxious. Work just piles up, doesn’t go way, right?!  And Monday was exhausting. I cannot remember a harder day, except maybe the day I woke up from the first surgery. That was a hard day.

We made the first leg and spent the night in STL at Kaki’s, always an oasis in a desert. We had a wonderful lunch with Mom the next day. Richie rebooked our flights two, maybe three times that day. We had dinner with all the Murphys in a five mile radius and then John took us to the airport at 8pm or so. We got to our house at about midnight Tuesday, twenty-four hours or so after our original schedule. Home to Charlie, whom I had missed terribly. How could he survive without me?

I felt that I needed some time to really think about what accepting a place in the trial means. It may seem straightforward to some who want me to jump at this chance, but for me, I needed a good rest and then a chance to have a good conversation with Madeline and Charlie about how this would play out.  

The most important thing to remember is this study is an experiment. I will be involved in an experiment. I believe that I am doing a good thing. Firstly, I am giving my blood, my cells, my experience to this experiment. Secondly, I am hoping that if this drug doesn’t give me respite from my cancer, that the information that the NIH team gathers from it will be useful and helpful to these and other scientists as they work to try and find a cure for cancer - all cancers. The best I can hope for is that my cancer responds to the new drug and stabilizes. The worst is that it doesn’t work for me, but I still have options.

AND I am hopeful still. How can I not be? I have everything to live for! I have Richie, Charlie and Maddie! I have Mom and the Good Guys, my Backus’ and all my friends.  I want to see all your faces again, and you know how stubborn I am?

I also found out I had a UTI once I arrived home. I am taking a lovely antibiotic right now and have been feeling better day by day. Richie is off for a cross country ski adventure with his brothers and a few good friends. Charlie raced today, had a good experience and seems happily exhausted, or exhausted but happy. I am not sure which one, but I love that he’s happy. 

Mads will be home in less that a week for Spring Break. And then Sunday, March 10 I will return to DC to start the study. I will spend two days in the hospital at the NIH. I will be home on Wednesday, March 13. I will go the NIH regularly, once a week for three weeks and the fourth week off. After two months, I will know if the study team thinks the trial drug is working for me. I can manage two months, easily. 

That’s my story and I am sticking to it! Aren’t I original? I have always said that it is so much easier having a plan. Often though, having a plan means that I am on chemo, but it is still much easier. I feel a great sense of relief knowing that I have a plan. 

So, thanks again, all you darlings!!! You cannot know how happy I am to have you in my corner. I think about all of you and pray for us all every day. As long as you, my caretakers are good, I am good.  Spring is coming and that will only make life more interesting.

Love you,
Maggie 

Hi Everyone, In just days, Madeline will be home from school for winter break, Charlie will have finished his first semester of junior year and Richie will take some time off. I am very excited. Christmas promises to be lovely again this year. I started back on chemo in early November. I was looking forward to starting the trial for a new drug, but didn’t pass all the tests required by the study. I have been having trouble with my kidneys for over three years now. I have a condition that is called hydronuephrosis. My ureters (which connect the kidneys and bladder) swell and restrict the flow of urine from kidneys to the bladder. For the past couple of years I have gotten by with uretal stents implanted to keep the ureters open, but this summer it became clear that chemo has done too much damage to my urinary system to continue without some outside help. On November 5, I had percutaneous nephrostomy tubes planted in my kidneys. I now have a line coming out of each kidney so that my bladder is bypassed. Now I truly am a bag lady - I have three of them! As I write this I have a colostomy, and two urine collection bags strapped to my waist. It is really not as bad as it sounds, from my point of view, because I am alive. It was becoming increasingly difficult to urinate in a normal manner. I had some really unfortunate problems with pain and cramping in my bladder and ureters which was getting worse on a daily basis. The tubes have dramatically changed this situation. I am still using pain medication but much less of it. I can tell you that I hate oxycodone and the haze it puts me into. It makes me stupid and restricts so much of what I can do on a daily basis. And I can tell you that without the oxycodone I would find it hard to function daily. So to be able to have less pain and think more clearly is a gift. I had thought I was prepared for the tubes. They had been a part of the medical discussion for over three years and I had time to think about them, but I was not prepared. The physical pain was difficult enough, but the emotional and intellectual adjustments have been overwhelming. A month or so later, I have a routine and know what kind of clothes I can wear comfortably. I am vain and don’t want to ‘share’ these bags visually, but I am thankful for what they are doing for me and for the reprieve from pain. The only down side so far has been that I am likely more vulnerable to urinary tract infections. The best I can do is to use good hygiene and stay as healthy as possible. Everyday I feel a little bit better and a little bit more thankful for still being alive. Sometimes I am just amazed when I realize that I have beaten the odds and I am still here. My next goal, baby steps, remember, is to watch Charlie graduate from high school and help him move on to his next place in life. I had a long day in KC last week. A morning appointment with the urologist to check my incision sites, tubes and bags and schedule upcoming ‘maintenance’ appointments. In the afternoon I went to see Dr. Chapman. She is pleased with how I am managing and we had a good visit. The best news was that my CA125 is now headed in the right direction. At the end of October it was 615 and last Thursday it was down to 520. I feel like the turtle in this cancer race, slow and steady. Over the weekend, a dear friend came to visit. She was so important to me in those early days with Charlie and Madeline. We helped each other with work and child care. There were three of us then, Carey and Laura and myself, and the friendship of our boys spilled over to us. We had such a wonderful visit and they both gave me such joy - in seeing them and sharing our memories. It was a wonderful gift to have time to share with them! I will close with this lovely poem by Raymond Carver. It speaks to me on such a basic level. I think every day of how lucky I am. I have lived a wonderful life to this day. I have lived my dreams and know how lovingly I am held by those I love and who love me. Is there anymore that any of us could ask for? Not to me. love to you all, Maggie Late Fragment And did you get what you wanted from this life, even so? I did. And what did you want? To call myself beloved, to feel myself beloved on the earth.

It’s a beautiful Saturday, the sun is shining, 70 degrees, a light breeze. Richie is working in his shop, Charlie is out biking and I am taking IV vitamin C. It seems like ages since I have sent out an update. Madeline graduated from high school in May. We had a wonderful celebration, three graduates celebrating together with their friends and families. Our backyard was filled with music, laughter, a bouncy house and lots of food. Mom, Mary, Kaki and Chris came for the celebration and helped a bunch in getting the house cleaned and ready for all the party goers. Madeline came down with a cold that day and felt pretty lousy, but it was really a great celebration. Even though it was her day, I was secretly celebrating too because I made it to her graduation. Five years ago my goal was to get to this place. It has been an exhausting and long haul to make it this far, but I made it, and now my new goal is to see Charlie graduate and settled on his way to a happy future. I know I can make it. We had a great summer. We managed to get in some vacation time and went to Backus Camp in the Adirondacks. We drove up with Mads and Charlie leading the way. They were so excited to be back there. Richie and I were a little more nervous. I had not been back since the fateful summer of 2007. I was actually more scared than nervous. When we first walked into the woods at the top of the circle, I burst into happy tears, so delighted that I was there. Camp is very special to our family, it holds so many good memories for us and I wanted this visit to bring the same feelings. And it did. I wasn’t able to do as much physically as I wanted to and it took some planning to deal with my colostomy while there, but in the end I settled in nicely and we all enjoyed relaxing, swimming, sleeping and just "being" while at camp. On the way home, we took our time and visited Aunt Jean in Skaneatelas, NY. She took such good care of us five years ago and it was good to go back and see her without the haze of cancer surrounding us! We continued west to Chicago, visited the art museum and celebrated Charlie’s 16th birthday with deep dish pizza. When we arrived home, we hit the first day of the 100+ degree weather that stayed with us all summer. Summer was hard. The weather and the anticipation of Madeline leaving for college made for some stressful days. In early August, we got word that the chemo drugs I had been taking since September 2011 were not working any longer. The next week I needed a blood transfusion and after that, I decided to take a little time off the hamster wheel and let my body rest and recover. In late August, Madeline and I flew to Philadelphia and I helped her get settled in at school. I said good bye to her at 5:30pm on August 29th and haven’t seen her since. We did skype one day, but it’s just not the same. She is doing well. After a bout of homesickness, she was able to adjust her schedule, take some stress out of her days and she seems to be settling in rather nicely. She is very busy, but sounds very happy. We are hopeful. Charlie is blossoming without his sister. He is enjoying life as an only child. He is really working hard this semester. His grades are great, he is having fun in marching band, and he has his first job. He is working for good friends at their hardware store and I think he is having a good time learning new things. Even though I am enjoying this chemo break, I cannot stay off the stuff forever. I won’t spell out what would happen. We all know what it means. At my last visit, Dr. Chapman gave me a few options to choose from for the next step. One of the options would be to continue traditional chemo with avastin and cytoxan. I have been taking the avastin for about 11 months now and even though I was not excited about using it in the beginning, I have suffered none of the really horrible side effects. Cytoxan is an ‘old’ chemo drug, one of the first treatments given to ovarian cancer patients. My other option was to participate in a phase one clinical trial. I sent all the information regarding this to TJ and after discussing it with him, I have decided to try the trial. I don’t start that until Nov. 1, so I am still off the hamster wheel and feeling pretty good. I don’t have much anxiety about the trial or about being off chemo for right now. I have been ‘on’ chemo for so long, that this break is really delightful. I have a few screening tests for the trial that have to be done in the next month, but otherwise, I am working on things around the house. I have been sewing, painting, yoga, exercise, eating right and well and sleeping a lot! The fatigue from the chemo won’t be gone before I start the trial, but it’s not as all consuming when I am in active treatment. So, things are, in a sense, pretty wonderful. Things are as they should be. Cancer has taken so much, directed all of our decisions for the past five years, that in the absence of treatment, I was a little lost. But I am easily finding my footing and enjoying the beauty of each day. I am trying to get excited about knitting again - I can’t actually think about it - and I recently finished making a quilt for Madeline. Our life is good. I try to remember that we all have stress and burdens to carry, mine might be a little heavier than yours at the moment, but we are all doing our best to live in stressful times. Many thanks to everyone for your help. Dinners, prayers, good thoughts and energy - we feel them all. I know I would not be here today without all of you and what you have given to us these past five years. Thank you for holding me and mine in your hands and caring for us. I am so blessed to be here and to have all of you for my family and friends. Here’s to many more years and lots more laughs. Love, Maggie

Well, it’s been quite a while since I updated you all on what's been happening in our world. This is a very good sign, you know the saying, ‘no news is good news’ is really true. 

The last time I updated was early January. We were all ‘suffering’ a rather mild winter. I have to admit that I loved it, but I was also anxious most of winter waiting for that big storm to hit. It also, of course, made me think of all the global warming theories and to try to take a look at my own little corner of the world, checking in to see what I can do to make it better. And I did learn one really wonderful thing....it is a great distraction from the vagaries of our daily life with cancer. I didn’t spend much time this late winter nor have I spent much time this Spring thinking about cancer.  It’s been rather delightful!

Last Thanksgiving, I asked my lovely sisters if I could go on a vacation with them to Florida in the Spring. They have been going for 10 years now to spend a week lounging in the sun and going to the St. Louis Cardinal spring training games. For those of you who know Mary and Kaki, you understand how important this trip is for them. And now for me too! I have always wanted to go, just to spend some time with them, not so much for the baseball. But I am getting hooked. It’s only taken about 43 years! So this year I went to Jupiter, FL with my mom, Mary, Kaki and my cousin Peggy.  And I had a blast.  It was so much fun to see them in their natural habitat! Their knowledge of the game was wonderful and I learned a lot. I know how the game is played and most of the rules, but for the most part it was a much more intimate setting and I could really understand why they are drawn back year after year.

We spent equal amounts of time lounging in the sun, reading magazines, books and getting prettier and funnier as the days passed (thanks for that one, Peg)! I even came home with a bit of a tan, or my freckles just got more pronounced. I had such a wonderful time. Laughter and family are such great medicine. I have made that a priority in my treatment and I think it really pays off.  If I make the cut for next year, I may be able to go again. I am waiting for the customer service survey to fill out and will let you know if they have chosen for me to attend Spring Training 2013!

Right before I left for Florida, M received word that she had been admitted to Bryn Mawr College, and then received word the next day that Smith College wanted her to attend their school as well. Both schools offered her tremendous scholarships and we were all bouncing around in celebration.  Before I tell you more, let me explain about the interest in these schools. M took AP European history in her sophomore year.  She took the national exam at the end of the year and received a 5, which is the highest grade.  The testing organization then sells all the students names and grade reports and that’s how she got on Bryn Mawr and Smith’s lists.  So they started recruiting her about that time.  I really didn’t know anything about all this. (If I did, I had forgotten. It’s true what they say about chemo brain, menopause and just getting older in general!)  Madeline has always been quietly driven and I just assumed she had been pursuing this on her own all along. And she was, after they contacted her.  Last spring break (2011) we took a trip to the East coast so that we could visit both schools and basically we dropped her off and kept busy until we heard from her.  She loved both schools. She put her head down and started studying and has performed well in high school. She has a good GPA and class ranking and has been involved in many extracurriculars. I am really proud of her.

Mostly, though, I am awed.  My diagnosis was in July 2007. Madeline was 13 and Charlie had just turned 11. These have without any doubt been the hardest years of our lives.  Living with uncertainty and stress, chaos and depression are so very hard.  Although I am an optimist by nature, it takes strength every day just to drag myself out of bed and choose to meet the day. Imagine being a child in a home like that?! My mother instinct is strong though and I have worked every day to give my children a good example of how you persevere and choose to survive these kind of days.  I think Richie and I have done a really good job. And I think that M has done her work as well. She could have given up, as we have all wanted to at times, but she chose to reach for her dream and oh, how she did reach!!!

Last Thursday and Friday, M and I went to Philadelphia and visited Bryn Mawr.  It is a college founded under Quaker ideals and although it is no longer affiliated with them today, it still strives to hold to those ideals. I was very happy with all I learned regarding financial aid and student life. The campus is beautiful, founded in 1885 and was the first college for women to offer full graduate studies. The buildings are an eclectic mix of old and modern. It operates in a consortium with Haverford College, Swarthmore, and the University of Pennsylvania, all co-ed.  I was impressed and M is sold! She will accept their offer and we will help to make her dream come true. We are having happy days in the Backus house!

My wonderful little boy is doing well too. I think he is blossoming into such an interesting young man right now. I also am looking forward to seeing him grow out from under the shadow of his ‘big sis.’  He is still very interested in his bike riding. He was a bit side tracked this past month. He went to Disney World via Atlanta for a trip with his high school band. They took a class at Emory University and then performed at a Disney sponsored show and then had about two days at the park.  When he got home, Richie had finished restoring a 70s era Honda scooter. He uses it to get to school, band practice, fun with friends, that is to say, everywhere and all the time! He is working on his class schedule for next year and applied to be a class aide in the special education room. He found out this morning that he was accepted into the program and is very excited!!!!! He is also going to take some wood working and shop classes in addition to the regular requirements in the next two years. It’s his turn to figure out what excites and inspires him. I am so proud of him and he is happy.  What more can a mother ask for?

Richie and I? We are holding steady. Most days we fall into the reality with ease. This is our reality, no escaping it. Most days we use humor and strength to go with the flow, with whatever cancer presents to us. But other days are hard, tempers flare and our energies flag a bit. So basically, we are doing like everyone else. There is great comfort in this, as I never wanted the cancer to have such strength that it guided everything. And it doesn't. We are okay. 

So the next month will be busy indeed. We had to have a new roof installed and this project has morphed into having the house repainted. We are also going to have some of the more strenuous yard work hired out. Tony is managing the whole project for us and it is exciting and such a relief to have all this done. 

My plan is working! I made it five years to get M to high school graduation. Two more years and C will be graduating. This wonderful house we’ve made into our home needed a complete rehab when we moved in almost 13 years ago and we are down to the final projects. I don’t want to leave. period. But if I have to go someday, Richie won’t be left with the kids at home needing him desperately. They will be on their way to growing up and the house won’t be falling down around him.  So I will continue to set reasonable goals and strive to meet them.

We enjoyed a quiet winter and are looking forward to more of the same this summer. We hope to get to Camp, I haven’t been since 2007 and I miss it. I want to visit there in peace.  

And finally, I had an oncology appointment and chemo yesterday. I am on round seven of topetecan and avastin. While I feel quite good (on the good days), the hard days are still hard.  And my CA125 says what? Well, I have been hovering in the high 100s with my CA125 and my CTscans are showing the disease is stable.  The shadowy areas in my lungs were getting fainter on the last scan and my pelvic disease remains pretty much the same.  So, the topotecan and avastin seem to be holding me steady. My CA125 yesterday went up to 225, not a big jump but the wrong direction. I usually get about 7-8 months from chemo before we see any changes, so it may be that I am hitting the same cycle.  But let’s pray for it to last a bit longer. I am working with one of the integrative med docs to see if I can use iscador, made from the mistletoe plant, used in Europe for a long time now. It is showing promise with chronic ovarian patients like myself. TJ, I will be sending you info as I get it, so watch out!!

I won’t ever stop searching but I have to keep living, too. And I really love how and with whom I live. Thank you all for the repeated prayers, love, good energy and gestures. The food is wonderful, the favors are unforgettable, the hugs and the love sustain me.

Much love to you all,
Maggie