Living Incrementally

I was given Valium for my PET scan last week and it was a wonderful thing! I was able to go to my results appointment that afternoon without the usual nervousness and anxiety. Unfortunately, it wore off and although the results have still left me a little numb, I am faced again with one hell of a challenge to overcome.

The attempt at giving the drug 4 more weeks to “kick in” was a colossal failure. Or maybe it wasn’t, I don’t know. Colossal is kind of a strong word. However, all the tumors grew a little and another new one decided to take root adjacent to my bladder. Perhaps the drug has slowed down the growth but still I’m not stable and they certainly haven’t shrunk.

So we face another new chapter. One which involves a consult with a surgeon on Friday. That scar from my sternum to my pubic bone is going to be reopened and I’m going to be stapled back together again. I’m still wishing someone would come up with a surgical zipper so that each time I go in it makes it just a little easier. The surgeries get more complicated each time because of the adhesions from the previous ones. In this case the THREE previous.

Everyone keeps asking how I’m doing and I’m not sure I really have an answer. Though there are moments when I feel I’m unraveling, I am really just numb. Most of the time. At others, I look out the window and see D2 working in the yard next to her dad and she seems so competent and it throws me a little. Inside though, I am so thankful that there are ways she no longer needs me.

I watch D1 go about her days and am in awe how grown up she is. She went to prom last month and that felt huge. Being here for that milestone was something I can’t quite describe so I won’t even try.

D3 is on a quest for as many cool hairstyles as she can find and suddenly they all require my help. She will be in the middle of homework and look up and ask me a question not homework related but about surgery or the next drug. I know that cancer is on her mind.

The problem is, we’re not sure what that next drug will be. I have an idea but it’s so similar to the one I was on previously that I don’t know how much faith I have in it. So I simply look ahead as far as the surgery, as this month I only looked towards the scan on the 25th.

Since January I have lived in bits and pieces. To the arrival of the new drug, to the follow-up scan, and then the PET scan and now surgery. I will spend May living one band concert, solo day and field trip at a time. I’m not sure I remember how to look very far ahead. I am suddenly a little afraid to hope.

My neighbor made a comment about me being pessimistic about my PET scan. She said it as if I was at fault for the results but I won’t accept the blame! I was realistic because I’ve learned what cancer feels like. I know the difference between a hot flash and night sweats from tumor growth. We all do.

Since January, SG has been finding places he needs me to take him right before lunch time. He takes the bus to work but seems to need me to run him around town more than usual. Each time the task is completed, he asks me if I’m in the mood to grab a little lunch. I’ve gained 12 pounds since that first scan when we found out Nexavar had stopped working. He’s ok with that – he says I need to gain a little weight before surgery. At this rate they won’t be able to find the tumors in all the extra lunches, but we are finding the time together where we can and that’s really all that matters.

I’m not at all sure what’s ahead. Last time a drug failed, two more drugs and two surgeries quickly followed. I’m not sure I’m as strong as I was 4 years ago but as I’ve said before, I’ll say ok to anything that keeps me here for my family. Though they seem to be needing me less, I know they’re not ready for me to leave.

So I won’t.


Guardian Angels

I have struggled for two days to write a post about Boston, based on my own experiences at the Portland Marathon the last 4 years, but it’s just not coming.

I’ve written, I’ve edited, I’ve saved and in the end, I’ve trashed them all. Nothing I can say can truly capture the spirit and the camaraderie of a marathon and the people who come to watch so I should probably give up.

I only know that when I’m there, I feed off the encouragement of everyone from the tiny little old lady with the sign on her back that says, “This is my 34th marathon, what’s yours?”, to the lean elite runners that you see headed towards the finish when you feel like you’re just getting started, to the very overweight woman at the back of the pack who is struggling but is cheered on by everyone she meets at a turnaround, fellow marathoners and spectators alike. The one who will finish the slowest but will be the most inspirational person for many who are watching her.

So many people and so many stories. Few of them are the lean runners you think of when you imagine marathon runners. They are every day people of every age, shape and size working towards a common goal.

I have felt the emotion and sense of victory at the finish when you’re carried to the end by the encouragement of the spectators. The people who gave up their day to come celebrate with their runners as well as every stranger who passes them on the course. The same people who make up the list of injured and dead because some non-human piece of shit decided they would be his targets on Monday. I can’t begin to describe the feeling of watching the explosions on Monday knowing how important that group of spectators and everyone along the race course for that matter, are to the finishers. And also seeing runners themselves, who likely have overcome so much to be there, injured after what was probably one of the biggest accomplishments of their lives.

My heart is broken and the marathon memory that keeps coming to mind for me is a man I walked behind 2 years ago. The back of his shirt was covered with photos of him and what I assumed was his wife. They were at various races and what looked like vacations together. In many of them she was wearing a Wonder Woman cape. In the center was a picture of her alone and this time, he was walking alone.

As I was passing him, an Elton John song came on my mp3 that I usually skip because it’s too slow but this time I kept it because it reminds me of my Science Guy and I needed him with me at that moment. It feels like a good song to honor all those guardian angels who, without regard for their own safety, ran in to the explosions on Monday to help. Bless them all.

When a speed bump becomes a sink hole

Ok, first a bit of housekeeping – Somehow I seem to have accumulated several new followers, most of whom have blogs related to breast cancer, and it dawned on me that when I changed my blog theme my tabs disappeared and nowhere did it clarify that I have GIST (gastrointestinal stromal tumor).

Even though those of you who have been here awhile know that I’m a rare cancer freak, I changed my design last night so that my tabs are back in case anyone else new comes over to visit. If you are new, a post that kind of tells my story is The Day My World Changed.

Oh and thanks to all the new people who seem to think I might have something to say! I already adore you! As Nancy of Nancy’s Point so eloquently stated this morning, “mets stink no matter what kind of cancer”.  I hope that, though my situation is different, I have something to say that’s relatable regardless of what kind of cancer you have – or even if you don’t have any at all. We’re all in this thing together if in different ways.

And now the rest of the story………………..

The end of January, I wrote about my little speed bump, also known as new tumor growth. After 3 successful years on Nexavar, I’d developed resistance as I am known to do right about the 3 yr point. By the way, my 7th cancerversary passed in February and I didn’t even write about it. Big change from the 5 year mark huh?

Anyway, our  plan after Nexavar was to try a new drug, Tasigna, and scan again at 8 weeks. So we did. And that 1 new tumor? It grew. How did the rest of my abdomen & pelvis look? Not so pretty. It seems that 3 more of the little bastards have decided to join the party. Two more in my pelvis and another, just for fun, on the left lobe of my liver.

Because I’m completely in denial, we decided to stay on it for another 4 weeks and then do a PET/CT instead of just another CT. I want to see what kind of seeds have taken root and are just waiting to do me in. Also, we scanned a little early. There was a 2 week delay getting the new drugs then a week of gradual dose increase. My hope is that we just didn’t give it enough time. It is possible since the several existing small lesions on the right lobe of my liver actually decreased in size. Granted they were hardly measurable to begin with but I’ll take what I can. This drug is far too easy to take (re. side effects) and I don’t want to give up on it yet.

So that’s where I am, just the facts, none of the emotional baggage. I’ll save that post for another day this week. Suffice it to say, it’s been a tough couple of weeks.