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