Tuesday, June 29, 2010

First Radiation

Okay, so radiation went very easily today. Thank you for praying. The next prayer is for no side effects...

The radiation therapists called me as soon as I arrived, I went back and laid on a carbon fiber table, they lined me up with the lines, they did x-rays to check alignment, the doctor checked the set-up, the enormous two part machine radiated one side, rotated and then radiated the other side, then rotated and radiated up from underneath. They also drew the outline of the radiation area on each side of me and put transparent stickers on key parts of it so they can realign me easily each time I come in.

Apparently they use carbon fiber for the bed because it allows the radiation to pass through unchanged. Pretty cool.

The people there in radiation oncology are very good and very kind. I was out of there in half an hour, am praying for no side effects, and I am going to start my manic quilting project today (I already have an organization plan for a cutting station, a sewing station, and a layout station to make the process more efficient).


-When I was at church Sunday listening to my pastor talk about carrying one another’s burdens and love, I realized that is what I was trying to express in a lot of the ways I listed feeling blessed. So many people are walking with me, and carrying my burden with me, and loving me so well, that it makes this journey much less desolate.

-Along the burden bearing line, people can’t help me bear my burden unless they know I have one. Sharing my burden with others costs me because I have to be vulnerable and sometimes it’s exhausting to explain everything to people, but if I don’t share it they can’t help me...

-I stopped carrying the burdens of my spider. We broke up on Saturday. My spider was a nice little spider that lived in my shower. It started out living in the upper window frame, which was perfect because it took care of the little insects. Then, it started making its webs in the bathtub. Obviously this caused me distress because I didn’t want to drown one of God’s creatures, and especially one who had been so helpful, and especially since the process of death by drowning is so awful to contemplate. After numerous fiascos trying to move the spider from the bathtub to the upper window frame while it was spinning threads at a million miles an hour and dropping as fast as it could back down into the tub, the last straw snapped Saturday. After one of these fiascos, I couldn’t find my little spider and got really upset that I might have drowned it (the water was running...). Then, to my great relief, I saw it on the window covering. So I took it outside. Hopefully it’ll be happier out there. I can’t handle spider drama right now.

-Last night I was bouncing off the walls, trying not to irritate the people I was around, hyper for the first time in a very long time, and I realized that I was excited about today. Today is my first radiation treatment for the spot on my sacrum that’s pressing on my nerves and it’s the first possibility of eliminating or reducing the pain I’ve had for three weeks. I didn’t realize how much being restricted by the pain was wearing on me until I realized how excited I am about getting the treatment.

-Please pray that the treatment would effectively eliminate the pain, have as few side effects as possible, and that I would be wise and courageous in my encounters with people throughout the treatment process.

-More later when I get home from treatment.

Friday, June 25, 2010

I Am Blessed

In countless ways I can’t enumerate. This is what was on my mind today—in no particular order:

I am blessed to have parents, brothers, and sisters who would do anything to take care of me.

I am blessed to have been placed in a job, a church, and a hospital with strong leaders who keep an eye on me and who have been incredible throughout this whole cancer process.

I am blessed to be able to find an enormous (okay, it’s about an inch across but that seems enormous) lump in my left underarm today because it was hurting, feel a marble sized and hardness piece of junk in the base of my neck (which is very close to my head), contemplate how the cancer will effect my body as it grows and spreads from lymph node to lymph node and gets into bones, and still be peaceful—knowing the promises God has made me.

I am blessed to not yet look like I am terminally ill.

I am blessed to be able to be back in my own house for a long weekend of playing/building with metal, and hanging out with cool people, and living independently before I start radiation on Tuesday.

I am blessed to be able to drive myself wherever I want to go.

I am blessed to have God who breathes stars a quadrillion times bigger than our Earth talk to me and guide me and provide for me and make His presence known to me.

I am blessed to be able to walk and move my arms.

I am blessed that after resting a lot more in the last week my pain was minimal enough tonight to allow me to mow my own back yard. (Yes, I know this was a stupid thing to do but the psychological/emotional benefits outweighed, so far, the physical cost...)

I am blessed to have people I’ve never met praying for and encouraging me, making me laugh, making me magnificent artwork, and caring about me.

I am blessed to be able to eat a peanut butter and strawberry jam on potato bread sandwich when I want to.

I am blessed to even have the desire to write a post like this after the last three days I’ve experienced.

I am blessed to have a cousin who sends me awesome music like this:

Thursday, June 24, 2010

Cool Diagram

Of the sacral nerves/spine/pelvis. If you're interested, the area I'm getting radiated includes S1, S2, and L5...

If you click on the link above, and then click on the image, you can enlarge it...

Good News

Today was much better.

I ran into the radiation oncologist’s PA on my way into the radiation oncology office and got a lot of information.

She and the doctor went yesterday and spoke with a neuro-radiologist. He showed them the nerve strands coming out of the sacrum metastasis area. He said that he is pretty certain that the metastasis on the sacrum is putting pressure on a nerve that goes from there down toward the right hip joint and down my leg.... The PA also told me that the burning pain I was describing is often nerve pain.

It was pretty amazing that I “happened” to walk in right in front of her and learn all of that because if I hadn’t, I probably would have flipped out on the next set of people I was with and become pretty belligerent. It was really nice to talk with her.

Right after I talked with her, I went on to get a ct scan of my pelvis. The CT machine had a light on it that projected a red grid onto me and they used that to mark the locations for the radiation. They drew green x’s with markers and put transparent stickers in the intersection of the x lines, and also put two little metal bb’s on me (they are under stickers too). The x’s and bb’s will stay on and be used to line me up for the radiation.

I was hoping for little tattoo marks like I've seen used elsewhere but I'll just have to be content with the stickers and bb's...

Then the doctor drew on the CT images on a computer, using a marking tool to define the area to be radiated... I tried to get a CD of the images but haven’t yet. They are really cool, so I’m going to ask again next time.

Then I met with the doctor and his PA and he was very nice and relaxed about answering my questions.

So I left feeling much more confident in the process and much more informed and much less ambiguous about the whole thing.

My first radiation appt is for next Tues, June 30. I was hoping it’d be tomorrow but the doctor has to take the CT scans from today and go meet with the physics department to make calculations and measurements and dosage guidelines. After that, all of that information gets entered into the computer system that sets up the machine that actually does the radiation....

Thank you VERY much for praying for me. I went in today feeling very oppositional and skeptical and came out feeling very calm and informed.

God is good even when we can’t immediately see what He’s doing. Having faith that He’s working through these processes is very difficult sometimes when I’m in the midst of all of it and feeling overwhelmed. And sometimes it’s really hard to find the difference between what I’m feeling and experiencing and what I know to be true based on the promises He has made me. I guess that comes back to trying to find a healthy balance between the head/knowledge and the heart/feelings/emotions....

Wednesday, June 23, 2010



That feels like the outcome for today after spending from 11am to almost 6pm in transit or at the hospital.

I did get my port flushed and saw three of my favorite nurses up there.

There are three possible spots to radiate and, so far, the radiation oncologist doesn’t know which one is causing the problem.

He did all kinds of awful exams, none of which triggered the pain.

He’s going to take the symptom information that he got from me and go talk to a radiologist who will look at the scans and hopefully know which spot is causing it.

I’m not going to get radiated unless someone can tell me with near certainty which spot is the issue.

The radiation oncologist did make the interesting comment that they put a lot of weight on the scan results but find that the patient’s symptoms are usually two weeks ahead of what they can tell from the scan.

Go figure.

I’m supposed to be back up at the hospital at 1pm tomorrow for a “planning session” with the radiation oncologist. He said that, once they figure out which spot, the radiation will be ten treatments, every weekday for two weeks.

Anyway, I’m feeling pretty beaten down and frustrated.

Please pray for wisdom for these people who are trying to help me. Please pray for me, for whatever you feel like you should pray for.

More tomorrow, hopefully.

Tuesday, June 22, 2010

I’m Radioactive/Camping

The bottom line:
I’ve been having severe pain in my right hip joint.
Today I had a bone scan and an MRI.
Tomorrow I’m meeting with a radiation oncologist to discuss possible radiation for pain palliation.
I had a great time camping.

The whole line:
I’ve been having severe pain in my right hip joint that has been limiting my locomotion in a rather extremely distressing way for over two weeks. It’s usually not bad if I’m sitting down, not horrible if I’m lying down, but it’s really bad if I’m walking for more than a few minutes, and it’s especially awful going up and down steps or carrying anything of significance.

My doctor ordered a bone scan and an MRI to try to figure out what the cause of the hip joint pain is.

So, I was radioactive this morning. I’m probably not any more, but it sounds pretty crazy, doesn’t it?

This morning I went and got a radioactive tracer injection, got a preliminary bone scan, went and got an MRI, went and got the final bone scan after the radioactive tracer had settled in my bones, and got a CD with all of the images...

The bone scan, other than needing to have two veins stuck because the first didn’t work, was very easy. The only thing worth mentioning was that the tech was really nice and that the scanner got so close to my face that I thought it was going to take off my nose. It was so close my eyes couldn’t focus on it. I had a hard time not laughing. Of course if I had kept my eyes closed as the tech suggested, I wouldn’t have known how close it was.

The MRI on the other hand, was pretty wild. I’d heard all kinds of stories so I was bracing myself and praying a lot. I almost freaked out when the table slid into the MRI tube but then the tech pointed out that I could look out both ends, I noticed that there were nice lights inside of it, there was cool air blowing all over me, and it was a series of scans ranging from about 3-6 minutes long, not just one tortuous 30-minute scan. It was really loud and the noise reminded me of some kind of emergency alert kind of sound, but it was fine.

After that I got a CD full of all kinds of crazy images like these:

I'm pretty sure the big spot on my arm is where the tracer was injected....

I’m not exactly clear about what the detailed explanation of the pain is but the bottom line is that the cancer is causing it, one way or another.

I got referred to a radiation oncologist who will plan a course of radiation with the goal of pain management/reduction/ elimination in mind. My first appointment wasn’t going to be until next Wednesday, which almost made me have a complete meltdown for about an hour after I was told the date. Then, one of my guardian angels up at the hospital called and told me she got me an appointment TOMORROW. That was a HUGE relief.

I’ll post more tomorrow when I get more definitive information.

All I have to say right now is that it blows me away to see God working on my behalf through the person who got me the appointment tomorrow.

It also blows me away to read Isaiah 54, which He showed me through my dear mother this morning, and to see the multitude of ways it speaks directly to me and the things I’ve been struggling with.

Anyway, on a nice, happy note, I had a great time camping over the weekend plus a few days with my family and my dog.

Here are a few pictures:

Accidently coordinated on the tie-dye and khaki bottoms, playing ring toss.

Me and my sisters, hanging out.

My amazing birthday cake on a delightful birthday with some of my favorite people.

My and my dog's sleeping quarters, which were incredibly comfortable (that's a hammock with mosquito netting over it...).

Sunday, June 13, 2010

Peace Out

I’ll be taking a break from my blog for a few weeks.

I have two days of work this week and then will be going on vacation. I’ll be camping with some of my multitudinous family. Seven of us ten children will be there, plus some siblings' spouses, plus my parents, plus an unknown number of nieces and nephews, plus a couple dogs. We’ve been going to the same place every year for about forty years and I’m looking forward to it. I went for the first time when I was six weeks old and I’ve only missed once or twice in almost thirty-three years.

Photo taken from my hammock. It's a Prothonotary Warbler. You should click on this one and see it bigger...

I found it, my brother caught it. Photo © T. Depp

Chalk drawing with my nephew supervising.

The proverbial, but exquisite, camp fire.

After camping, I’m looking forward to spending time with family and friends, working on an illustration project, making a quilt for my brother and his wife who are expecting their first child, finishing some jewelry projects and working on some new ones, doing some woodworking, reading good books, traveling....

I just consolidated my eight sticky notes of to do lists etc. So now that I have my life all organized my summer will be a lot better. I guess that’s what happens when you keep sticky note pads in four locations in your house.

Peace out, Martha

Saturday, June 12, 2010

The Known

You can click on it to see it bigger, I think...

Stuff of Late

Here is a rough list of what has been going on in the last little while:
-Within the last week I was having shooting pains on the sides of the front of my neck. After poking, I found bruised spots that feel like messed up lymph nodes.
-Last Sunday the mild hip joint pain that I’ve been having for a week or so suddenly got really intense after a very mild walk for forty minutes. It’s been pretty bad for the last week. It seems likely that it would be what is making the lower back pain worse.
-I had all of the inguinal node(s) drama/puffiness/localized swelling and bruised feeling which started about a week and a half ago, and which thankfully hasn't progressed.
-I found a new node under my left arm a couple weeks ago. That makes two under there.
-I had to take Darvocet for the hip joint pain three times this past week. It didn’t help very much and is probably what caused the mild abdominal discomfort I had several times this week.
-I had to take anti-nausea meds twice this past week for, you guessed it, nausea.

"Do not let your hearts be troubled.

Trust in God; trust also in me.

In my Father's house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you.

And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am.

You know the way to the place where I am going....

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid."
From John 14

Tuesday, June 8, 2010

An Opportunity to Help

My friend Jen is riding her bike 100 miles to raise support for cancer research via the Lance Armstrong Foundation. Please consider supporting her as she works in conjunction with the LAF to increase quality of life for people with cancer. Her website is: http://raisetheroop.com/
Thanks, Martha

Thursday, June 3, 2010

Lymph Stuff Etc

I forgot to mention a couple things last night:

-First, I did talk to my doctor and he did indicate that it might be lymphedema.
-Second, if it is lymphedema, it’s “part of the process.”
-Third, he did say that palliative surgery to remove the nodes would likely make the situation worse, as would radiation of them.
-Fourth, it might not even be lymphedema.
-Fifth, I found out that lymphedema can most likely be palliated, which is good.
-Sixth, he said this current stuff doesn’t tell him anything about my prognosis. Other things would, but this doesn’t.
-Seventh, if you want to know, it’s in my inguinal nodes, and here’s a link to an easy to look at lymph system diagram.

Today the situation was pretty much the same, with a little less swelling (the swelling is just in the area specific to the inguinal lymph nodes... it's not my whole leg), a little more pain, and some weird uncomfortable sensations of unknown etiology (okay, so I like that word—even though the word would look cooler if the US spelled it aetiology like the UK does...). It was a relief to wake up this morning and find my leg the same size as it was when I went to bed. The swelling was almost gone this morning and increased as the day progressed. It’s not that bad right now though.

I find myself going in two opposite directions with this current drama, sometimes at almost the same time. The first is to realize that the God who breathes stars into existence (see Psalm 33:6), and not twinkly little stars, but huge powerful stars like the sun, is the same God who has promised never to leave me or forsake me, and who has promised that He is coming for me soon, and who has promised that He will take me gently. The second is to speculate about what’s next physically, which is a very, very bad direction for me to let my mind go. For example, I was doing dishes and trying to decide if it would be better to have lymphedema and deal with its horrors, or if I’d rather have a tumor growing in my pelvis causing all kinds of internal chaos... Like that’s a helpful thing to think about....

On a different note, I got pretty mad today when someone made a racist/prejudiced/ignorant racial comment to me. I think it’s going to be hilarious when all of the people who still think God likes white people best get to Heaven and find that white people are the minority and that they’re not any more or less special than every other human being on the planet. I mean, DUH, have we looked around the planet today? The whole planet doesn’t look like our little neighborhoods and social circles. I can imagine Jesus smiling and saying, “I love them as much as I love you. No less, no more.”

This is getting long, but I have to include one more thing. This is my first tattoo. It is my symbol of hope and protection. I got it during an incredibly nerve-wracking time in my life. It’s an ongoing encouragement to me and it’s still my favorite tattoo.

-The circles are a visual representation of John 14:20
“....I am in my Father, and you are in me, and I am in you.”

-The spikes are from Jeremiah 20: 11
“But the LORD is with me as a dread warrior;
therefore my persecutors will stumble;
they will not overcome me.
They will be greatly shamed,
for they will not succeed.
Their eternal dishonor
will never be forgotten.”

-The tendrils are signs of hope and growth from Isaiah 43:18-19
"Forget the former things;
do not dwell on the past.
See, I am doing a new thing!
Now it springs up; do you not perceive it?
I am making a way in the desert
and streams in the wasteland.

Wednesday, June 2, 2010

Lymph Node Drama

Today I got scared. Just for the record. Just in case anyone thinks I’m “so brave” all the time. Which, by the way, I'm not.

I realized today that in one of the areas where I have recently found two, maybe three, messed up lymph nodes, there is some swelling. I noticed a tiny bit of puffiness a few weeks ago but not enough to really pay attention to it. Today, I noticed definite swelling and some internal discomfort. Swelling is scary because it can be a sign of lymphedema.

Hopefully it’s not lymphedema.

According to the Mayo Clinic:
“Lymphedema refers to swelling that generally occurs in one of your arms or legs. Although lymphedema tends to affect just one arm or leg, sometimes both arms or both legs may be swollen.

Lymphedema is caused by a blockage in your lymphatic system, an important part of your immune and circulatory systems. The blockage prevents lymph fluid from draining well, and as the fluid builds up, the swelling continues.”

If you want to read more about it, you can check THIS or THIS. I would not recommend looking at images of it, unless you enjoy being horrified. Most of the images show the worst cases possible.

Hopefully it’s a passing thing and will vanish by tomorrow... On a positive note, I have a friend who is a physical therapist and there's a physical therapist who specializes in lymphadema at the hospital where my friend works. So if I need to see someone, there's a connection there.

Obviously this has triggered the eighty-five million questions I have in my head... I definitely need prayer for grace and peace. I also need to keep reminding myself of the promises God has made me....

That's it for now. I need to go to sleep. Thank you for your prayers...