A Small Amount of Normal

The good news: My internal radiation treatments are done.

The less-than-stellar news: My last one did not go off without a hitch on Wednesday. When the device was removed, I received a deep cut which required stitches (think episiotomy) and lost enough blood that I required transfusions for blood and platelets.

The good news: Thank goodness this happened on my last one, otherwise I don't know what would have been done.

The less-than-stellar news: I was hoping for a couple of weeks of recovery before my scan on 9/11. I guess I still get that, but this version is much more painful and my energy level is ridiculously low.

Here is the thing: during this whole internal radiation process I have felt like an idiot. I am the patient who cannot handle the device. I am the patient where things never go the same way twice. I am the patient who needs surgery and transfusions after something that should cause a little spotting. It just feels like too much. I just want some small thing during this process to be normal. To be so ordinary it doesn't require my husband to change his work schedule and my mom to discuss blood levels with my nurses and my children not to wonder where I have gone and why when I return I can't play with them or pick them up or have them sit in my lap.

LOVE or LIFE or DEATH or HEAVEN

One of the hardest things for me about losing a child is feeling that no one really understands what it is like. Even my friends who have lost children. They didn't lose Cora. And I didn't lose their children. We now all have this horrible thread woven into our lives, but each thread is different. Then there are those who are so near and dear to us, who have been by our sides each and every day, but who can't fully understand.

I am not an avid reader of other blogs, but there are a few out there that when I have a few moments I like to read. "Like" feels like an odd choice of word given what I am about to write about, but I can't find another word that feels more appropriate. A blog I read is by a mother who lost her son, a seventh grader, a few weeks before we lost Cora. I "like" her blog because she is brutally honest and sweet and angry and faithful and doesn't gloss over tough topics. Today she wrote: "I was an ardent meeting-goer in my previous life, but at this point there is no way I'm going to get all up in arms about the minutiae of church business or youth sports, or whatever. I mean, seriously, if it's not about LOVE or LIFE or DEATH or HEAVEN, it seems like bull to me at this point."

In the words of another blogger I read, Sister On.

Cora's Sand Pictures

Last Monday a local doctor, Matthew Dunn, spoke at a local outdoor business about his multi-day ultrathons. My mom was driving me home from the hospital and even though I was exhausted and on some pretty serious pain meds, I wanted to go meet him. For those of you who have seen Cora's sand pictures, you may recall one done in Nepal and that her story was shared by the writer with a refugee who then prayed for her. The writer was Matthew Dunn. So I went, heard his great stories, and then got to meet him and thank him. It was only a few moments, but they were very powerful to me.

The Friday before my thwarted swim race, I hopped onto Facebook where one of my college housemates, Bridget, had posted a picture of Cora's name in the sand. It was at the starting point of the race with the note that she had gone down to the beach to do it, but someone else already had done it. Months ago I asked my friend David for the address of the beach so I could write her name there. Turns out he wrote it for me since I couldn't and Bridget took a picture. My people...they are breathtaking in their acts of kindness and remembrance.

Cora's first sand picture was sent to us on November 2 by our recklessly thoughtful friend Meg. A few weeks back she had the idea of making a map showing where Cora's sand pictures have been drawn around the world (there have been over 200). The map is a little clunky, but I think it is amazing to see how her pictures have spread around the world. I can't even get my head around the fact that we lost her 10 months ago today.


View Sand Pictures in a larger map

Plablah...

Thursday was a bust.

I went in for treatment, was put under and then woke up in excruciating pain once again. They had to pull the device within minutes, so no treatment. This time they did not give me the drug to make the memory hazy, which is good since I could clearly describe the pain to Duncan. Previously I used the word "pinching" to describe the pain, which upon reflection does sound very superficial and like I am the world's biggest wimp. The description I gave him this time was like an animal paw trap ~ relentless in its pain and equally so when I tried to move or they tried to move me. That helped him with some perspective, I think.

The memory is not so good because I (a) shit, that hurt and (b) I was begging them to help me - over and over. I think I may actually need to pay for physical therapy for Marlene and Brooke, two of the amazing techs, because I squeezed their hands so hard for so long.

My next treatment will be sometime...soon. Duncan is working with one of the gyn surgical oncologists down at St. Peter's to schedule my last three treatments. Time is a factor since the ideal is to keep hitting the cancer cells with radiation before they have a chance to rebuild. My last successful treatment was on Monday, so Duncan is hoping for Tuesday or Wednesday, but it all depends on all the schedules meshing.

A lot of folks have emailed or messaged asking me why I cannot simply receive general anesthesia for this procedure. The procedure start to finish lasts about 4 hours. For about 10 minutes of that time I am isolated while receiving the radiation treatment and I cannot be unattended and under general anesthesia. These doctors and their details...
[Though I get the image of a doctor in the room with me in one of those big, white suits you see in movies. That would be exciting. And freaky.]

We are pressing on around here. Crosby is cutting about 5 teeth and has this funny little crawl that is amazingly fast. Kyan is in the midst of potty training and thinks he has many more important things to do than actually use the potty, which is making the process very...damp. Rory has suddenly become this bigger, much more independent boy, but thankfully still is willing to snuggle at night.
Kelly constantly burns the candle at both ends and refuses to listen to me about going to bed. I am hanging in there ~ the side effects of radiation are much worse than the side effects of chemo for me, but I am hopeful that once I finally wrap up radiation, I will start to feel better again.

Why, Hello

Friday I went to St. Peter's Hospital (not my 'usual' hospital) to attempt the internal radiation treatment again (this is the one that caused such severe pain the last time). It was painful, but I made it through. The doctors used a regional block and morphine which took the edge off. I still cried, but at least I could get through it.

For a fleeting moment (I think it was the morphine) - I thought I would be able to go do my swim on Saturday, but no such luck. I started having pain Friday night that increased through the day on Saturday and into Sunday morning. I ended up in the ER needing to have the sleeve (part of the internal radiation device) removed because it was causing so much pain. My ER doc came in and said, "I have never even seen one before. I am not sure how to remove it." My response: "It looks like a golf tee. Just pull it out."

That was a really dumb thing for me to say. In the end Chris, one of my local radiation oncologists (and I should note, the one who always gets me at my worst times...), came in to remove it.

So then Monday I was scheduled for another internal radiation treatment at St. Peter's. This time my mom came with me because Kelly has this job thing...
Duncan (St. Peter's radiation oncologist) agreed that no part of the device would be left in this time and also planned to use a slightly different pain control plan.

You probably already know this isn't going to go well, eh?

The docs use anesthesia to put the device in, but it is short lasting. Most patients can then handle the pain with some meds. Something about me makes that not the case - maybe it is my anatomy or some of the side effects from the treatments I have already received, but it causes pain in the 8-9 range on the 0-10 scale for me.
So I woke up in severe pain which lasted almost the full time (about 2 hours). My poor mom - I had her tracking the time as I muttered under my breath "just xx minutes longer" and then asked her just to talk...anything to help distract me because that deep breathing stuff was so not working.

But, I made it through another one. Two down, three to go. On Thursday Duncan has a new pain control plan to try. I am optimistic that it will work, but even if it doesn't this treatment has to get done and after making it through Monday, I know I can do it again. It just may not be very pretty or pleasant.


- Posted using BlogPress from my iPad

Anxiety and Disappointment

On Friday I head back to the hospital for another attempt at the internal radiation that is needed to obliterate the cervical cancer. After the last attempt, my anxiety for Friday is pretty much through the roof. I am hopeful the pain will be manageable, but also very aware that I may end up exactly where I was two weeks ago.

I am disappointed because between chemotherapy on Thursday and my surgery on Friday it is highly unlikely that I will be able to do my swim up in Mirror Lake on Saturday. The chemo usually hits me hardest after two days, and toss in the anesthesia from Friday, and it is highly unlikely I will be in any shape to do an open water swim. Not swimming is disappointing, but equally disappointing is not heading up with the folks I usually swim with and also missing the opportunity to swim with and see one of my undergraduate classmates whom I haven't seen since graduation (yikes!).

One Decade

Ten years ago today Kelly and I were married. Kelly wanted a church wedding. In the summer, so we could have outdoor pictures. I wanted Vegas. With Elvis. Kelly won.

Kelly and I have known each other for a long time...since I was in third grade and he was in fifth. We went to different schools, but attended the same church youth group. When we were in high school and college we ended up working at the same restaurant together (where he swears he was always honest about the tips and any discrepancies should be taken up with Peter Mead...). We became friends over movie nights, youth group events, work, the Wing Street gyroscope, trips back and forth to each other's colleges, and dozens of other events.

And then we weren't friends. We call it the hiatus. Then one Christmas Eve a small group of former youth group members were talking after church - all greeting each other with hugs and smiles. But when I saw Kelly, I held out my hand for a handshake and that was it. It was nice and awkward.

So awkward that a few days after Christmas I called his number and left a message on his machine to apologize. He called back, and ten months later we were engaged to be married.

I loved our church wedding. I was worried I was going to cry, but I took my dad's arm and looked at Kelly and all of our family and friends in the church and felt an overwhelming sense of calm and joy. I knew, without a doubt, I was exactly where I was supposed to be.

I am extraordinarily blessed with my marriage and however long I have left, I am thankful I get to spend that time with Kelly.

Knocked for a Loop

The past week has been a rough one. After last Wednesday, I continued to have some pretty serious discomfort - discomfort that led to me having another surgery yesterday to remove the radiation sleeve. The discomfort also led me to use, for the first time since I have been diagnosed, some (to me) strong pain meds. I am not a fan of pain meds. Perhaps I should say, I am not a fan of how pain meds make my head feel cloudy. I am a fan of how they diminish the pain.

As a consequence of feeling crappy both physically and mentally, I didn't really have the weekend I had planned. I missed out on several things I wanted to do, plus I wanted to spend more time with my kids, since three days last week I was at all-day medical stuff.

So I was wallowing about fucking cancer and treatment and how I couldn't keep up with my life. Until last week, every "side effect" was expected - I knew I would lose a day or two after my big chemo treatments, I knew radiation would cause fatigue, I did not expect to be knocked on my ass by what was intended to be a routine part of treatment.

And then I thought about my weekend. On Friday night I still got to go out with my girlfriends-I just got a ride and drank water, but I still got to catch up with them. Then Saturday I was able to go to the start and finish of the Brad Moynihan Golf Tournament-where I met some great folks, ran into friends and family members, and the older boys had a grand time checking out the golf carts and catching golf balls tourney players gave them. Sunday was the annual Master's swim around Clay Island, where my in-laws have a home. I wasn't up to the swim, but we had a great group come up and it was a perfect afternoon to hang out on the lake.

I really needed to remember that even though things don't always go as planned, there is still ample good to be found.