Saturday, January 28, 2012

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.

Thursday, January 26, 2012

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.

Wednesday, January 25, 2012

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.

Tuesday, January 17, 2012

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.

Saturday, January 14, 2012

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.

Thursday, January 12, 2012

Another Day

Ended up vomiting a few times last night, so I decided to take some Zofran. I hate the side effects of Zofran, but I just had to stop puking. Then I slept and slept and slept. The whole family slept till 9 this morning! Felt good. My chest is sore (I think my lung itself feels sore) and I plan to take it very easy at home today. (My neck is now hurting for the 6th day in a row. I think it gets worse at night.) The most exciting thing I have planned for today is a shower.

Wednesday, January 11, 2012

Posting From My Very Own Bed

So happy to share that everything went well and I am at he in my very own bed. I asked the doctor for an image to share with you and I think he liked the idea--told me to email h and he'd have something for me. More later. Purring cat and pillow are ganging up on me.

Tuesday, January 10, 2012

RFA Tomorrow (Wednesday, January 11)

Today I planned to take Capt. Adorable ice skating. Got all dressed and ready and drove there, only to confront a closed gate at the entrance. Of Course! The park is closed on Tuesdays. Boohoo. We were both disappointed.

So, instead we visited a local wild bird food store, went to the library to pick up some books about microscopes and making slides that I had reserved a few days ago, then stopped at the grocery store, and then home. On the way here and there we talked about things ranging from how radio waves are different from sound waves, to letter sounds, to several what-if type questions about the procedure tomorrow. Once home, the discussion got a little more intense and we did cry together a little. I told him that it is normal to worry and that he can always talk to me and Daddy about this. I told him that the doctors are well educated and experienced and that they will be able to make good decisions no matter what happens, even if it is something they do not expect.

Later, we discussion letter sounds some more, and I suggested he write the word "poop" on his chalk board. First he wrote PEP, then when I told him the sound an E makes, he wrote PUP, and then I told him the "oo" sound in "poop" is made with 2 o's. So, he wrote POOP. Then we talked about the word fart. He was able to write FART with some coaching, but no answers, from me. I was so proud. ;) Then he pointed out that dart sounds like fart and we discussed how it would be spelled (he did not want to write it, but did spell it aloud).

A visit to the post office to mail thank-you notes, some driving around the neighborhood, a visit with a friend (and her 2 kids), and then home to cook dinner, where I ran out of steam. We ended up going out to eat and walked over to the bookstore afterwards. It was nice.

Everything is packed for Capt. Adorable's day (and potentially, his night) tomorrow. Now I'm off to  shower and bed.

Captain Obvious may update this blog with news of the procedure tomorrow, or maybe I will. Arrival time is 7:00 am and the RFA is scheduled for 9:00. I was told on the phone that there are 2 reasons for me to stay overnight: 1) if I vomit too much and 2) I must be able to walk. So, the goal is no puking (and accept the anti-nausea meds offered, despite the knowledge that they will cause constipation) and walk walk walk so I can go home home home.

Monday, January 9, 2012

Happy Birthday to Captain Adorable!

Captain Adorable turned 5 on Friday. We had a weekend of fun with family and friends to celebrate.  I am so proud of him and I love him so deeply; there is no joy like the joy of my child. There is nothing I would rather celebrate than him. So happy to share the celebration with so many wonderful people!

My next RFA is on Wednesday. I am hoping to go home but planning for spending the night. So thankful to the friends who are helping our family by taking care of him. Knowing that my son is happy, comfortable, and safe allows me to relax without worry. Goodness knows I have enough worry about.

The idea of myself lying on a table unconscious with a breathing tube down my throat, with the anesthesia team shutting off my breathing freaks me out so much. I really didn't even want to write about it because it makes me super scared and brings up many questions that I do not want to think about since I might lose it if I do.

Tuesday, January 3, 2012

RFA Do-Over Scheduled

The RFA with general anesthetic has been scheduled for January 11. I am (to my dismay) scheduled for admission....with a chance I could go home the same yes, let's concentrate on the chance of going home...but also have to plan for staying. Thanks to sweet friends and neighbors, Captain Adorable will be in good hands on January 11, so that is all ok. I am sure we can figure out care for subsequent days if it comes to that as well. I just wish I didn't have to stay in the hospital alone (which is what will happen if I have to stay overnight, since Captain Obvious will have to go home to care for Capt. Adorable, thus leaving me to fend for myself). I have such bad memories of staying at JHH after my first thoracotomy...

I called NCI and have to gather a bunch of records since they have requested. Once the records have been reviewed, they will call me to schedule an appointment. They've got a Phase I trial I might be able to participate in, but that is probably not what I want to do. The issue, of course, as always, is that in my case there is no standard of care because my cancer is non-standard. No one really knows the answer...