Nothing To See Here

Sorry I've not posted in a while--I guess I've not had much I wanted to share. I had a colonoscopy/esophagogastroduodenoscopy with multiple biopsies of the stomach and intestinal lining on March 23. There is a new prep (MoviPrep) and it was easier and better than the stuff I had to take last time (GoLightly). Still not easy or fun, but not as awful as I remember! No biopsy results yet, but I assume they were normal since everything else was. Then the CT scan on March 30 showed the part of my lung that was affected by the RFA on Jan 11, but no other new growth. My next CT scan is June 30 (in 3 months), so we are back to observation mode. Which is good.


Immerman Angels asked me to take on a second match, so I am again trying to help someone else (similar in age, family situation, and has a similar cancer) who has recently been diagnosed take this all in and deal with it somehow. I hope I can help her--this cancer stuff is so deep and so wide. It changes you forever.


Captain Adorable is growing fast, learning fast, and has a great summer planned. He starts kindergarten (sob!) this fall. Captain Obvious, as usual, works hard on many projects and sometimes makes time for fun, too. My parents have finally finished their straw bale guest house and it is amazing! Makes me want to go to Tennessee more often.

Warm Day in January

Yesterday was a warm and beautiful day. In the morning, Captain Adorable practiced writing lowercase letters in his Kumon workbook (guess what? He loves it! Much more fun than writing on his chalkboard!). After lunch, we went for a little walk around the neighborhood...well actually, I walked and he rode the new scooter Oma and Opa gave him for his birthday. We stopped at the little playground along the way, where I sat on a bench and he played. After a while, he asked me to push him on the swing, but instead I tried (yet again) to teach him to pump his legs and swing for himself. This accomplished nothing but annoyed him so much he got off the swing set and wouldn't talk to me anymore, so I went back to my bench.

Once home, we draw the solar system in chalk on the driveway. Capt. Adorable drew the Earth, the moon, and Jupiter. In fact, he took such care and time drawing those that I did all the other planets. While drawing, he told me fact after fact (did you know our earth has a solid core and our moon has frozen water in the craters? Did you know that astronomers call Pluto (now known as a dwarf planet), the Lonely Wanderer?). He he learned it all from A Child's Introduction to the Night Sky: The Story of the Stars, Planets, and Constellations--and How You Can Find Them in the Sky by Michael Driscoll and Meredith Hamilton, which I bought for Hanukkah, and he absolutely loves. We had a great time with our solar system drawing, and because we were outside we got to chat with a couple of neighbors who were out taking advantage of the beautiful weather as well.

Later we went to the big playground in our neighborhood and there were a few other families out playing also. We had a great time, and towards the end of the afternoon, all the kids big enough were on the swings. I saw Captain Adorable happily pumping himself on the swing!!!!!!!!!!! He figured it out at last. A wonderful warm day in January!

Getting Better

My breathing is getting better. Still not back to what it was, but better. I neglcted to say in the last post that both the radiologist and my oncologist said the shortness of breath was probably caused by inflammation. Which is good, because inflammation heals.

Pancakes Together

My darling son and I made pancakes for breakfast this morning. It was all his doing! No, really!

He requested the pancakes. He told me which cookbook he wanted to use. He whisked the egg, poured in the buttermilk, whisked them together, gently stirred while I carefully poured in the melted butter. He sifted the (white and whole wheat) flour, baking powder, sugar, and salt together. He told me when the pan was ready for the batter. He carefully placed the blueberries in the pancakes while they were cooking. He hungrily and appreciatively ate 4 of them. Next time I am going to let him try cracking the egg again.

I love making pancakes together.

Breathing is Fun

Since the RFA, I have been much more out of breath than before. Ever since my first thoracotomy back in September 2007, I have been more prone to panting than normal people, and this tendency to pant has only become more noticeable as I have undergone more surgeries and procedures that reduced my lung capacity. Of course, the big cancerous tumor growing in my lung before the thoracotomy did not help my breathing either, so it has been a long time since I have been able to breathe normally. I sometimes wonder when was the last time I did breathe normally.

I had been warned that the RFA could result in a pneumothorax, but did not think I had one. However, as the days wore on and my ability to breathe did not seem to be improving (and also my sweet MIL encouraged me to call), I decided to call the doctor. I ended up having to go get a chest x-ray and thank goodness there is no pneumothorax. However, it does seem that I am having a harder time/taking a longer time than other patients to recover this time. (And thank goodness I could find a radiology place that allowed me to bring Captain Adorable, because that made it so very much easier for me to get the thing done.)

Again I wonder how many more times I can sacrifice a bit of lung. What is my lung capacity? Do I want to know--are there negative implications (oh, you've got plenty more capacity, let's cut out some more!) to knowing? I saw an old man walking along carrying an oxygen tank yesterday and I worry that is my own future. I really enjoy breathing. I really enjoy moving my body and experiencing the world as a physical being. I don't want to be limited by a lack of lung capacity. Being out of breath is no fun and can get frightening quickly. While snorkeling in Hawaii (ah, what a fun trip) a few years ago, I became very out of breath and tired and was pretty scared. I don't like that drowning feeling. How many times can I come back from one of these procedures? How many times can I recover? Of course I will always keep fighting and pushing and healing, but oh, right this minute I am feeling tired. Tired looking back on the many times I've had to get up when I wanted to lie down, and tired looking ahead to the many more times I will have to push myself to get my base line lung capacity back again. And tired knowing that it will never get better than it was before this RFA.

Oncologist called to follow up today (left him messages about what was going on yesterday). Next appointment is Feb 3. We're going to perhaps schedule another CT scan soon, before the 3 month mark indicated to follow up on the RFA, to check if there is anything else growing. I really hope there is nothing to see.

Needle In My Chest

Today I emailed the radiologist who performed the RFA and asked him two questions: 

1) There are 3 incisions. Is this because other instruments had to be inserted to stabilize my lung? Or some other reason? 2) Do you have any cool images of the RFA? I'd love to see a couple if you have time to find one for me.

He answered:

There are 3 incisions because your tumor moved around and we had to use two separate needle systems. Please find images attached.

I edited the photos to remove my name and identifying numbers, but here they are, for your viewing pleasure. (If you click on them, you will see a larger version, as with all images on this blog.) That's a needle in my chest! The lesion is located on the left of the heart as I stand, so these images are taken from my feet, looking up through my body. 

The lesion is marked with a size indication here.

The needle going into the lesion (crazy how you can see it all the way through my body like that!)
You can also see how close it is to my heart here.

Below is an image I took of myself (with my beloved phone) which shows the incisions. After seeing me in pain and gently stroking the spot where the incisions are located on my chest, Captain Adorable gave me a kiss there to make it feel better (what a sweet surprise). He asked, "Why is your lung in your boobie?" I thought that was funny, (but logical, as you may be able to see from the photo) but explained that the lung is under/behind, not in, the boobie. :)

I have noticed much more panting since the RFA. I hope that this too will fade with time. I dislike being out of breath.

No Yeast (Fungal) Infection!!

On the stretcher just outside the CT room. Ready to get this done!

As you know if you've been reading this blog for  while, I develop a yeast infection on my skin at the surgical site every single time I have a surgical procedure. I even have to make sure to ask for a prescription before the surgery because I know it will happen. (I am allergic to miconazole, which is the yeast infection medicine you can buy over the counter, so I have to get a prescription).

This time, as I mentioned this to the nurse before going in to the procedure room, she asked why I get the infection. I told her that I think it is from the cleaning solution used to prep for surgery. After some discussion, she said that she thinks it is a reaction to the self-contained surgical scrub tool which contains chlorhexidine and asked if I had the same reaction to betadine. I had a couple of surgeries as a teenager, before doctors started using chlorhexidine and never had a fungal infection after one of those. She suggested that we ask the doctor if we can use betadine this time. He agreed and guess what?!?! No Yeast Infection!

So, I read up a little on chlorhexidine and it is somewhat scary sounding. So much of what I end up getting on me or in me sounds scary, though...but anyhow, the thing that sounds most scary to me is this article in which JHH recommends bathing in the stuff! (Read it to understand who and why.) It is also used, as chlorhexidine gluconate, as a mouth wash. It is recognized that it is not effective against fungal infections. Therefore I think that my hypothesis is correct--I think that the chlorhexidine kills all the good bugs but leaves the bad bugs, which then grow without check on my skin.

Thank you to that wonderful nurse for figuring this out for me. I will ask for betadine instead of chlorhexidine for every subsequent surgery from now on. I will be thinking of her every single time.